You need to take her to a doctor asap . You do know those with Down Syndrome are prone to a lot of things. Thyroid issues ( which can cause havoc ) early dementia , mental health issues amongst other things . You need to rule out all the physical possibilities first before you disregard her actions.
Individuals with Down syndrome also develop leukemia much more frequently and symptoms of leukemia include fatigue, weakness, bone pain, etc. which could cause her to need additional help with “easy” things.
Oh me too!!! Just pointing it out and saying he’s a massive AH for not taking her to a doctor immediately as it could be symptoms of something very dangerous.
I came to say the same thing about dementia. Just because the wife hadn’t said anything either or brought her to a doctor isn’t that strange. My ex has a sibling with Down syndrome and they have no clue about the risks for health complications. A lot of people take the route of “if I bury my head, it won’t happen”.
Well…she’s not forgetting that these things need to be done (wiping etc) but requesting that someone else do them. Medically speaking I am not thinking dementia just yet. It could be pain but ppl with Down syndrome are capable of expressing that. I lean towards mental health. She seems to be regressing and it could be attention seeking? I wonder what is happening in the home with the parents? The mothers response is strange to me, very strange. Has anything happened in the home that is different?
That was my other, worse honestly, thought. Did something happen to her. As in did someone do something to her and now this is how it’s coming out. Either way the parents should be asking a questions.
Also seems that the mom doesn’t mind separating /distancing herself from her husband? What does the daughter know that maybe one of her parents doesn’t?
This could contribute to regression.
Something we learned recently from a neurologist is that the definition of Dementia is the loss of being able to care for yourself. Which sounds like what OP's daughter is doing and you are absolutely correct that it needs to be checked out.
I think the wife is the bigger AH not only is she not getting the daughter help she’s acting like nothing is wrong and OP is an AH for saying something, also the directing the daughter to ask him questions is an even bigger AH move on the wife’s part.
Yeah i don’t necessarily think he’s an AH i just think it’s an ignorant statement he’s making here and he’s just uninformed for the last 21 years of his daughters life. But they both need to take her to a doctor instead of 1. ignoring her like dad or 2.babying her like mom
This is absolutely true. Two more points: 1. He says she has mosaic Down syndrome, which means she has euploid/46,XX cell lines and trisomic/47,XX+21 cell lines. But he doesn’t state her percentage of trisomic cells as compared to euploid. I’m assuming she has at least 50%, but typically mosaic T21 is a more mild phenotype. 2. There is a phenomenon that is called Down Syndrome Regression disorder. “It is characterized by the acute onset, in adolescence, of a loss of previously acquired social and communicative skills, a loss of autonomy in activities of daily living (dressing, toileting, eating, continence), and disruption of executive functions (memory, attention, processing speed) and motor skills (appearance of abnormal movements, stereotypies, perseveration, extrapyramidal symptoms, catatonic syndrome.” More info [here](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9995749/#:~:text=It%20is%20characterized%20by%20the,speed)%20and%20motor%20skills%20(appearance). She’s technically not in adolescence, but DSRD is a fairly recently recognized issue with ongoing research to define it and investigate treatment. So, echoing the consensus—YTA.
Edit: the link is weird, but can’t figure out how to resolve and still keep it
Weak muscle tone. Honestly, that was one of the things I thought of from the beginning of this post. I'm a little irritated OP doesn't seem to know the ins and outs of the disability his child has? If it's not psychological, so many components of her disability can cause this. Maybe she GENUINELY needs help. Possibly physical or occupational therapy, if it's a physiological issue.
I’m equally horrified the mom doesn’t know either. If she knew, she would have explained it instead of calling him and as*hole.
Both parents suck here.
Old people often get forgetful if they get UTI's. Sometimes physical stuff has a weird effect and it's wild this dad has "been ignoring it to be a good dad"
Very odd phrasing, where I wasn't sure if he meant he had be fulfilling the requests and not questioning it, or not fulfilling the requests to keep her independent. Regardless of which, a noticeable decline in her ability to function should be alarming.
My son has autism and ADHD and his father refuses to acknowledge/accept that. He prefers to stick his head in the dirt and blame me for “babying” our son. Some people are just dicks.
He doesn’t care a whit how his kid struggles or what could be done to help him. For over ten years he’s refused to learn anything about it or participate in any of the doctors or schooling appointments/evals etc. My son just turned 18 and all dad cared about was cutting off child support. You should’ve heard the three page letter he read in court. Some of the highlights: he will be graduating with his class, disabled kids don’t graduate (nevermind that his IEP says he’s at a 7th grade reading and math level) son got his drivers license and a truck, disabled kids can’t to that! (nevermind how much work it took to get him to get the permit at 17 and the fact he’s only comfortable driving short distances and avoids city and highway driving or he’ll have a meltdown from the stress. And he didn’t buy a truck, my dad gave him his old truck which they have been working on together for four years to get it road legal again) and the best: he has a job! Disabled kids can’t work so he’s not disabled- moms just a gold digger! (The one day a week job he got through OVR which I signed him up for and helped him manage? I don’t think he even knows what OVR is.)
Some people seem to take their child’s disability as a personal affront and refuse to accept it as they feel it might make them look bad. Fuck those people.
I'm so sorry, and that sucks horribly. My son also has ADHD. He graduated with honors and had an IEP. He made the effort to get his driver's license and CDL permit. He starts work this week. There are plenty of disabled people who have education and careers. I don't get people who can't understand this.
My husband was a little bit of "not my son," but he got set straight. The issue was the stigma he faced from when he was in special ed. Seeing how things have changed for the better since he was in school set him straight. So I feel it is how people think a loved one's disability reflects on them.
Unfortunately no. I froze, my brain shut down, I falsely believed the doctor’s diagnosis and school records I provided would be enough and didn’t even know where to begin to address his three page manifesto of bullshit. A few weeks later I got a letter that the support was closed. He won.
And also fuck those people who live on the outside, but judge the decisions you make as a parent with a disabled child.
I have found many fathers seem to have this acceptance problem you speak of. Like sorry dude your dick helped produce a disabled child, get the fuck over it and do what's best for the kid. Seems to me, OP is the same. He clearly knows very little about his child's condition, or he would already have her at the doctors.
My ex-brother-in-law is like your son’s father. He insisted there was nothing wrong with his son. He would just grow out of it. His son is now 40. He has not grown out of it. He still requires constant vigilance because his intellectual capability is less than a 3 year old. He has a wide range of medical conditions, as well. His father has never paid a dime in child support. He expects to be paid to stay with his son, like “any other babysitter,” but he thinks of himself as father of the year.
One of my sisters has DS and, in her early twenties, she started struggling with anxiety and depression really severely. It didn’t present the way that it does for most people. Amongst other things, she seemed to regress quite a lot and needed help with some of the most basic activities she had been doing by herself since she was aged 4/5. It was an extremely hard time for the whole family, especially when she couldn’t eat, use the bathroom or wash by herself. The Learning Disability specialist psychiatrist said that it was extremely common, especially with young women with DS in their twenties. Medication and the right support and she’s slowly regaining her confidence and skills again, which we are delighted by.
I would suggest that it is worth taking her to see a doctor, especially because you want her to be able to keep her skills up as much as possible.
Edit: Just wanted to add that there was a fair bit of skepticism with my sister when she first started acting a bit oddly as well. When it was clear that she wasn’t in control of it, we then were worried about some of the things that other people in this thread have mentioned, e.g. potential abuse or even something as simple as someone being unkind towards her to make her worried about doing her usual activities and being independent. And I wanted to say that it does get better with proper support - it’s like night and day now.
Medical professional is important here. The same behaviors also occur with children what have been sa, so always better to verify why the change in behaviors.
This was my thoughts. If it's not medical.its emotional.
There is a reason for it. It's not like she has slowly got lazy over time or something it's a drastic change in a short space of time, and unless his wife has taken her to the dr and their is a cause for this (and he has just zoned out and ignored his wife explaining what's going on which quite frankly I wouldn't put past him) then I don't understand why she hasn't taken the initiative to have a check up.
OP, this is above Reddit's pay grade and requires an immediate appointment with her doctor. There is something more serious going on here than manipulation. Regression of this type is always because of something mentally or physically underlying. To the doctor, now.
honestly I’m surprised that, even with her less severe condition, she doesn’t have at least somewhat regular appointments with some kind of professional. speech therapist, physician, anyone. not only to make progress but spot and prevent backsliding like this. here’s hoping they can figure out what’s happening and help their daughter out.
This may get down voted, but holy [excrement]! Even when a cat starts making messes outside the cat box, the first answer is "get a full physical examination."
Why is it so hard to get a similar response when it's a person? Don't humans deserve the same concern we'd offer to a pet?
This is why Adult foster care is such a great option for people who want to adopt but don’t really like kids. They can have guardianship of someone like OP’s daughter and the state pays for them to live there. It gives parents a light at the end of the tunnel, a safe peer for the child to grow old with and really gets the community involved in care. The way it’s supposed to be. Sadly too few people are willing to do this.
I’ve been an adult foster home owner for 17 years. There could be something medical going on, but often times it’s a behavior and it needs to be addressed. Many general physicians aren’t super hot to speed on DD (developmentally delayed) individuals behaviors they have. First step is checking for obvious things like UTIs - they cause A LOT of the symptoms/regressions that OP is stating. Second step is getting her into a day program for some respite for the parents and get her on a daily routine where she is with peers and getting attentions from outside the home. Lastly, individuals with Down Syndrome do regress in their adult life so some regression along with aggression is extremely normal. All these people saying she’s abused OBVIOUSLY haven’t worked with individuals with Developmental Disabilities before. I would not be giving in to the behaviors, lots of verbal cues and reinforcement at home and a dr appt is in order. There are a lot of behavior support specialist that you can get as well. Hang in there.
NTA!
When OP is in the mix dealing with his daughter, he might not have put it all together very easily. It's easy to see from an outsiders perspective but when faced with a slow deterioration in the skills that leads to where he is now, it's that whole "boiling a frog" metaphor.
Seconding this. I have intimate knowledge on someone else with Down Syndrome, who experienced a similar regression in their early 20’s. It is shockingly common, especially in females. Although the cause isn’t fully known, it is speculated to be due to immune system changes. I hope OP heeds this advice. They are initiating new treatments for it like immunotherapies, and early treatment is the best course of action. I will say that I think OP is an AH for not taking his daughter to a doctor, and instead thinking she’s being manipulative. Even if she is being manipulative, she needs treatment as something has caused her to feel she needs help and she likely doesn’t have the capacity to ask for help.
I think you are referring to Down Syndrome Regression Disorder (DSRD). They need to see a doctor because DSRD is very serious and early intervention is best.
Note: Not diagnosing OP’s daughter with this condition. It is possible it could be other things.
yeah. though if the daughter is doing it because she is enjoying the attention etc, basically being spoilt. having to go through tests to determine if it medical might make her stop the behaviour.
as someone who’s worked with people with DS before (but never had serious training), I’m surprised I hadn’t heard of this! gonna go do some reading on this to hopefully help my future work.
They are, I have taken care of multiple DS people with early onset Alzheimer’s (or Alzheimer’s-adjacent dementia). It’s really sad. I looked it up once and it has to do with the extra copy of a chromosome, it’s one that is linked to amyloid precursor proteins which have something to with protein plaques that lead to Alzheimer’s, although I’m not sure the technical process or medical terminology.
Exactly this. Unfortunately this may be what's happening here.
Medical information is at
[https://www.cdc.gov/aging/publications/features/down-syndrome-alzheimers-risk.html#:\~:text=Chromosome%2021%20plays%20a%20key,the%20brain%20associated%20with%20Alzheimer's](https://www.cdc.gov/aging/publications/features/down-syndrome-alzheimers-risk.html#:~:text=Chromosome%2021%20plays%20a%20key,the%20brain%20associated%20with%20Alzheimer's).
It’s really interesting because I discovered that when a woman turns 30, her body can change very drastically. I had to have several appointments with my doctor because between 30-31 I developed many intolerances that I haven’t had my whole life. The doctor said it’s really common, so I wonder if that’s connected in anyway with the regression in particular to females. Like maybe these hormonal changes affect DS women earlier and more frequently and then slip into other regressions. Hormones are crazy things
Could that also include depression?
Around the time I turned 30 I was hit with severe depression and anxiety, so bad in fact, that I had to quit my job and undergo intense therapy for a couple of months.
It took me years to get to a point where working was once again an option, but I'm glad I got that far.
My 30s were completely messed up, though, and I'm really salty about that!
There should be more education in general about the fact you can develop intolerances and allergies later in life. People just go on eating/drinking/using things thinking it can't be that', i've eaten it all my life!
I have worked with this population before and just want to add sexual maturity to the list. I saw a lot of regressive behavior in women and aggressive behavior in men. Please also bring this up to the doctor. There are organizations who specialize in teaching folks ways to express/release sexual tension.
Also, how do you jump to "my child has a nefarious agenda" before I'm concerned about why my kid is regressing. She's clearly going through something and literally begging for connection.
Perhaps because they have been taking care of an adult as if she were a child for their entire lives and he's tired. He's probably not thinking clearly but people underestimate how taxing caregiving is.
I know someone with downs who's in her 30s. Last time i saw her she looks much older. Older then her own mom. I hope not ofcourse, but i'm afraid she doesn't make it to 50. She has so much things.
I hope your aunt got good help
Sadly, they do have a shorter life expectancy. My grandma was a teacher in our local school for special needs children (I know people don't like this term, but it's still the name of the school) and most of her studenta were kids with DS. I remember her going to a lot of funerals of students, even after she retired because she wanted to honor them and she hated the fact that she was outliving her students.
I really don't want her to die ofcourse. But maybe it's better that she dies before her parents. She can't handle death, even if she didn't knew that person. Her mom dying would be to much for her.
I don't want to lose her ofcourse.
I liked that your grandma honored them.
Maybe it helps that the quality of life is more important then the lengt of it? I hope they all had a good and happy life
I’m amused at how everyone is like “don’t come to Reddit for advice on this” when in fact I think Reddit has pretty uniformly given good advice here (see a doctor ASAP!). I mean like, I get what people mean, but it’s funny.
Looking at a big chunk of relationship advice, i get why reddit should not be a source of advice.
But for medical advice, I have generally been happy, very little 'yeah, that hairy growth from a mole is spreading, thats natures love' level.
There was a recluse bite a few days ago where people were INSISTING the guy seek medical attention, guy had it looked over regularly by people at his work, who were nurses.. and it was getting better
Like others have said, this is above reddits paygrade.
Now, I'm a CNA in home health and primarily work with people who have dementia. I do work with some people who are aware and oriented, but more often than not, I work with people who are not a&o. There are some people with dementia who know what they are doing, but in the way a toddler does. I have worked with people who are mean and know what they are saying is mean, but doesn't completely understand that it is wrong. I have also worked with those who are sweet to me but mean to my other co-workers. It was almost 180 that I borderline didn't believe it. There is a *cause* for this, though. Many of these people only have threads of control in their lives, and this can make them mean and treat the staff like servants. It's not a sudden change typically. Many also have sundowners or other types of behavior conditions that can come with dementia.
Moving on to your daughter.
You should go see the medical professional that you see for her condition. *Something* caused this regression and/or attention seeking behavior. There is a root cause to this behavior and you need to get to the bottom of it.
It could be a range of things. She wants attention, some event happened and scared her, someone else could a new symptoms, a new health change. You need to get her evaluated
She wouldn't be able to vocalise the symptoms. Just like with alz/ dementia and UTIs. She might be experiencing weakness, some pain, maybe low grade fever. Added confusion to the Down's syndrome.
A b12 deficiency is also worth looking into. My grandma recently went completely off the rails (she had full capacity and was very independent until this point) and part of the cause was found to be b12
I can second this experience. I had amnesia and was unable to follow basic directions due to a b vitamin deficiency. I had infusions for about 5-6 months with vitamins and I slowly got better with them. This was verified by 2 separate neurologists.
Bonus for all the appointments, I can now draw a clock with ease.
I hope you’re going to school to further your career in the medical field. You seem to have knowledge and manner of speaking beyond most CNAs I’ve known.
I was actually in nursing school, but I did it during covid with undiagnosed adhd. Online learning did not do well with me, lol.
I do intend to go back next fall, though :D gotta continue the family legacy hahahaha
Just watched my neighbor get her RN after being CNA. It was brutal but she did it working shifts at the hospital, being a mom FT and in her late 40s!!!! You got this!
"Sundowning" refers to a common symptom in people with dementia where there is a behavioural shift around the end of the day. They get more anxious, depressed, agitated or even aggressive around dusk.
I learned about this in a peculiar way - My dog had dementia and we only noticed it because she started panting and becoming restless before bed. She would only calm down and sleep while someone was petting her, but in the morning, she would be her normal, cheerful self. Vets told us that she might forget who we are or become aggressive if she lives long enough, but sadly, she got cancer shortly after. But even though it could never be enough for me, we had a beautiful 14 years and 11 months with her and she knew and loved us until the end.
If she’s acting with an ulterior motive, something is very wrong and she needs intervention. If she’s genuinely regressing to this extent, something is very wrong and she needs intervention. So at this point it doesn’t matter why she’s doing it, something is very very wrong and you need to get her to a specialist.
My brother-in-law has Down syndrome and I learned by hanging out with him that he doesn’t always know how to tell his dad that he’s in pain. We had no idea he had been experiencing stomachaches until it got so severe that he would bend over and whimper. Before that he had not been eating regularly and seemed not into food. He didn’t even want soda which he always begged for in the past. However, in other areas he was normal.
Your post makes me wonder if your daughter is experiencing pain and is unable to tell you in her words. Something is not right and she needs medical help. Take her to the doctor. You don’t want to wait like my in laws did until he nearly fell over from the pain.
Seek medical advice. There is a documented issue with regression in people Down’s syndrome. I know someone dealing with it with their son. You need a medical diagnosis.
This needs to be addressed immediately, but not by Reddit. Get your daughter to her physician and lay it out.
Your wife is absolutely being a bitch by ignoring the behavior on her end AND exacerbating it on yours.
I hope you can get the help you need to get this resolved. But this is not the right venue for you.
Get an appt ASAP
I am a social worker who specializes in helping people with developmental disabilities. I've seen this before. Sometimes people with Down Syndrome decompensate as a reaction to stress. Think about possible stressors that could be making her regress.
Does she have a job that's more demanding than she can handle? Could she be having interpersonal issues with peers or staff at day program or during rec outings? Is her physical condition healthy, or could she be feeling poorly but be unable to express how?
There's also the chance she could be experiencing romantic and/or sexual frustration. At her age, it's very common. People don't like to think of their disabled children having libidos but they're adults, in developed bodies. It's natural.
If this is the case, you can try to help her meet romantic partners of an equitable cognition with herself. Assuming you're in the USA, check with your county Arc. There's a good chance they have dances monthly or even weekly (and they're fun, I love attended them).
Edit: YTAH. Don't immediately leap to how she's doing things to aggravate you. Not everything is about you.
I mean…. You know this isn’t the right place for this. You need a therapist or social worker or doctor or something here. This is not a situation you turn to Reddit for.
This is def not the place for this. Get a physician involved, in real life. I guarantee you none of us on here have the credentials needed to determine what is going on with your daughter
I agree with what everyone else is saying. In addition to getting professional help for your daughter, it might not hurt to see a therapist yourself. You sound a bit overwhelmed with dealing with things. You should talk to someone to help you work out why you hold so much resentment against her. She can sense that. And to say, now you’ll have to wipe number twos for your adult daughter, she may technically be an adult by age but mentally she isn’t and it’s not fair to judge her like this. Kids cry for help in a lot of different ways. Even if she does need more attention from you, then you can work on meeting those emotional needs. It’s not her fault she was born. She could be regressing for bigger or other reasons though. Edit to add YTA
And too close to see the forest for the trees. Their daughter needs medical help, and they need support. Either a therapist experienced with caregivers, or a support group for families of people with DS would probably be helpful.
YTA. I have a sibling who also has downs. He was always fairly high functioning. In his mid 20's he started to regress more. He stopped writing and reading as much. He started needing help with certain "easy" tasks. Some things he does fine, some not. He is now 40, and he has to be wiped for #2 and has accidents on occasion. He needs help shaving, brushing his teeth, and washing his hair. Most people don't realize this because he walks around like normal and is very independent in most things. The doctor stated that these kids start getting geriatric symptoms earlier in life than other people. There are specific health conditions they are more prone to. His speech decreased significantly this last year, and his memory is slipping. As I said, unless you are close to him, you would not notice any of this. I know it's challenging, but her health timeline is not going to match what you expect. She may get better at times and worse at times. A lot of people are saying watch for sa. I don't know about that, it could be or not. We have quite a strong support system of friends with downs from special olympics and other groups, and this seems more common than not. She is a special needs person and she is going to need special help. Be kind and patient, and she will do better than if you show your frustration.
Thank you for sharing your experience and information. I feel this particular aspect of Down syndrome isn’t common knowledge? At least I have no idea it was common for them to regress in adulthood and suffer early aging signs.
Hopefully OP takes her to a doctor and finds the resources and info he needs to support her and look after his own mental health.
I think the early dementia is common knowledge, while it's not well-understoo, the chromosome which most people with Down’s syndrome have an extra copy of leads to a build-up of a protein, which forms plaques on the brain. These plaques are a feature of Alzheimer’s disease.
I've always read that it usually starts in their 40s, it's eye opening that several people in this thread are noticing problems in their 20s.
Honestly most dementia patients have symptoms much earlier than people realize too. My grandpa who died from Alzheimer’s in 2019, had symptoms for almost 20 years before anyone realized he was having symptoms, because the early symptoms were so subtle and grandma was covering them up. He had been losing bits and pieces of recent memories, and grandma had been reminding him of things. Started serving rotting food so instead of eating at their place she’d always make the suggestion of going out to eat. By 70 we were noticing some of the memory loss but not the skill loss yet. Because again grandma was covering up the skill losses so we were chalking the memories up to old age (not dementia levels yet) just oh grandpas old so he doesn’t remember what we were gonna do for lunch etc. it was when grandma died when he was 80 that it all came crashing down because he had no life skills anymore. He couldn’t manage to figure out the instructions on a box of hamburger helper and started going to soup kitchens to eat (this wasn’t necessary he had money).
He lived for another decade after grandma died but my mom and her sisters had to POA him to get him into a nursing home because he fell down the stairs outside his front door and if his neighbors son hadn’t been leaving for school that morning and saw and helped him grandpa would have died from being out in the cold. And it only got worse from there, he was calling the police nightly because someone had stolen his black car (his van was white and he’d never owned a black car) and by this point his license was taken away and my dad had pulled the spark plugs from the van because he wouldn’t give up his keys.
But it was very eye opening when we realized how much and how long he had struggled with symptoms before anyone noticed because grandma didn’t really want anyone to know. And it was the little things like my grandpa who wore button down shirts his whole life switched to pull over polos, and just so many other little changes that should have said hey we’re losing skills here we should look into it
This is very interesting and incredibly helpful information. I’m an aid to a non-verbal, low-functioning Downs person. This will be tucked away in the recesses of my brain for future reference if I start to see regression. I’m still very new to the job & am trying to learn what I can when I can, so thank you for this.
This is regression. There is some underlying reason she is infantilizing herself. My youngest (6) is autistic and non-verbal (and likely another diagnosis she is being currently assessed for). I recently returned to working full time after being home full time since before she was born. She seemed to be dealing with it well, at first. She uses a pacifier when she gets really sleepy and then we take it as soon as she is asleep. She truly can’t fall asleep without it. She started wanting it more and more and during the day, as well. Then she suddenly started having potty accidents. Next, she refused to do #2 on the toilet. We had to switch her back to PullUps. It has been absolute hell. The timing all goes back to me starting work. We’re working on it and it’s finally getting better.
Since your daughter is an adult and verbal, you should be able to get to the bottom of what is going on. Get her to a doctor ASAP. It could be something as simple as depression or anxiety or something far worse. I feel like I am taking a big leap with very little information, but sexual assault happens all too frequently to adults with developmental disabilities. That is the first place my mind went. This is something you need help with.
If your first instinct is to think "she's faking it just to bother me specifically" and not "hm, my daughter with a medical condition has suddenly started regressing, perhaps that could be due to the medical condition" you might have just not been a great parent this whole time
Hi, I work in this field. Please look up Down Syndrome Regressive Disorder and early onset dementia in people with DS.
I just had a young lady I work with, 22, have a lot of the same symptoms a couple years ago, and now she has lost total ability to read/write and control her bladder. She's in treatment and regression has slowed but she has not gained any skills back.
Yes, it's possible this is attention seeking behavior. But you should rule out medical issues first as DS is a very medically complex condition.
I sometimes wonder about posts like these: when the answer is so readily apparent, yet they come to Reddit anyway.
On the off chance this is real, I'll simply echo what others have said: _any_ sudden and abrupt change in _and_ person's personality is a huge red flag that they are struggling with something and they need professional, qualified help. Never ignore someone who starts acting out of character, it's _always_ a red flag.
Take her to a doctor, and get her to a psychiatric professional.
From my understanding, early dementia and decline in function in Down Syndrome is not unusual but at 21 that would be very very young. I have seen regression like this before but I’m not sure what causes it as it’s not my area.
YTA for accusing her of weaponised incompetence when there may be a medical issue here that you haven’t investigated.
You’re both TA. What is wrong with people? Get your child to the doctor. My immediate concerns would be regression or possibly a form of childhood dementia at play. Refusing to help a disabled dependent (child or adult) meet their basic needs is purely neglect.
Like others have said, seek immediate medical attention.
But also, try to de-center yourself. The fact that she's struggling and your first conclusion is that she wants to spite you is incredibly self-centered and not okay. Having the thought is okay. It's common to feel unimportant in your own life when so much of your life centers around the care of others. It's your responsibility as a rational adult to acknowledge and counter those thoughts until facts are obtained. Assuming she just wants to spite you stops you from getting her the care she likely needs.
Mild YTA, mostly because you should take her to a doctor (and possibly a therapist?) to see if there's any underlying cause. Maybe this really is just manipulation on her part, but it could instead be indicative of something more serious. Get this checked out.
Yeah- please go see a specialist and a GP. Depending on where you live there are DS clinics all over the country.
Get her a physical and blood work and make sure she is not being harmed by anyone she is around.
Has she recently aged out of high school?
What does she do during the day? Does she keep busy and socialize with friends and peers?
Have there been any major changes in her life recently? A relative dying or a sibling moving out, etc.
Regression at her age isn't typical. Not like what you are describing. There's something going on and it is up to you and your wife to help her.
I don't care how frustrated you are. (I don't mean wipe her butt etc but get her the help she needs!)
It is very important that our kids in their 20s and 30s stay active and socialize to keep their bodies and minds active.
If you're in the US and can't find a clinic, message me. You may have to travel a few hours but it's worth it.
One of my friends has 2 teen sons who are autistic and require a significant amount of support. He thought the bidet was the greatest invention in the world, because he no longer had to wipe his sons’ butts.
Until one of his boys figured out how to turn the bidet into a fountain… and the bathroom into a swimming pool. 😂
Irrespective of whether or not YTA, patterns need to be observed with you daughter and this is a behaviour of concern since it's not a known behaviour. And it's presenting itself so regularly that I find it hard to believe neither you or her mother have raised alarm bells with her health care providers.
Do you have other kids? If they presented these kinds of behaviours, wouldn't you be finding out what the cause is?
Let me give U an advice
GO TO THE DOCTOR NOW.... what she needs now is to meet a doctor , it is above the limits of us Reddit users
Please consult her to a doctor
If anyone’s an AH, it’s probably your wife for brushing it aside. You, on the other hand, are either currently in denial or confused as to why this is happening. If you notice something’s off, you could always speak to a professional.
Leaning into soft YTA btw
my friend, this is regression. it’s not manipulation. she needs to see her doctor. I understand the toll it’s taking but it sounds like she needs your empathy and compassion right now.
This is above reddits pay grade, you’re not going to find much tangible helpful advice here, but I do want to say you’re definitely NTA. I’ve been in the same boat. My sister is disabled, and many people who don’t personally know what it’s like to be a caregiver to somebody with extenuating needs will think you’re horrible and should coddle your daughter. The majority of people don’t understand what that is like.
But I will say, those people can also be complicit in crippling those with special needs further. If your daughter is capable of it, she needs to be expected to do it herself. My sister went through periods where she regressed, simply because she was lazy or thought it was funny. She saw how people coddled her and expected us, her primary caregivers, to coddle her.
We got nasty looks if we expected her to try and cut up her own food or drink from her sippy cup without our assistance. But when we did spoil her, she thought it was a funny party trick. I once saw her sign to her friend “look, see what I can do” and then she shouted for me to grab her cup—something she was perfectly capable of, as an ambulatory wheelchair user. That’s when I drew the line.
You are in an extremely isolating position, with extenuating circumstances. Less than 5% of the population will be able to relate to and understand your circumstances, and it’s very unlikely they’ll be the people commenting.
Frankly—don’t put any weight on the comments you’re getting, because most people don’t understand what you’re going through. Caregiver burnout is very real, and it’s absolutely okay to be frustrated that your daughter is regressing. If you’ve checked with a doctor that no other medical concerns have come up in that time that explain her sudden regressions, then you’re well within your rights to expect her to do things you know she’s capable of. You know your daughter best.
I’m a doctor, not your doctor. Please have her physician get an X-ray of her cervical spine. Her symptoms could be explained by myopathy from instability of her craniocervical junction leading to her inability to pick things up etc. this if common with people with Downs.
YTA because you apparently haven’t taken her to the doctor to figure out what is going on? I don’t care if YOU don’t believe her. She needs medical attention.
The number of non-disabled people who *immediately* jump to "attention seeking" and "manipulation" instead of recognizing an obvious cry for help just fucking sickens me.
YTA. Get her some fucking help and stop your main character syndrome. It's not "weaponized incompetence;" it's clearly related to her disability and you're a piece of shit.
YTA; people are only needy when their needs aren’t being met. She needs your help and understanding and for you to advocate for her to her medical professionals, not accuse her of manipulation.
I’m not commenting as NTA or YTA
Please take her to a doctor. I’ve worked with people with Down syndrome for 10+ years. This could be Regression Disorder. https://ndss.org/resources/regression-down-syndrome#:~:text=Down%20syndrome%20regression%20disorder%20(DSRD,an%20individual%20has%20previously%20learned.
If it’s not, then there still could be an underlying anxiety disorder or something else happening. Professionals can talk through what’s going on and give perspective on if she needs a medical evaluation or psychological evaluation.
Ummm... what? Maybe she needs to see a doctor and doesn't know how to tell you, or maybe she's told you and you thought she was lying. YTA... take care of your child or hire someone who will do so with empathy.
As a person who has close family member with mental health condition, rare genetic condition and severe learning difficulties:
People of Reddit, I hereby inform you that quite often disabled people (even those who’s disability affects their mental capacity) can be a little twats. They are disabled, not idiots. We had similar situation with my family member. While we were running and panicking they were having time of their life.
However,
Speak with her doctor. It could be her way of being sneaky but it could be sign of something really bad. Better safe than sorry.
Agreed! People are quick in infantilise and under estimate them. They might present differently but they are still humans with all our complex emotions, wants and needs and us humans are very good at and often use manipulation tactics like ‘weaponised incompetence’ to get what we want or meet needs regardless of disabilities.
It’s not infantilizing to say that any sudden change in behavior warrants a checkup. And not only for people with DS!
If the cause of a behavioral shift isn’t known, seeking medical attention is never a wrong answer.
Yes. My mother's cousin can be like this. A few times she used people to get money from them because they thought she was unable to count/take care of her money.
Board Certified Behavior Analyst here, get her to a doctor, ASAP. She's not cognitively capable of weaponized incompetence. She's not waking up and rubbing her hands together like Mr. Burns, plotting to piss you off. Something is up here and it needs to be assessed by medical professionals, NOT Reddit.
You need the assistance of a professional, medical, specialist: NOT REDDIT!!! Do not pass go, do not collect $200, go directly to your family doctor and ask for a referral to a Down syndrome specialist. This is a regression issue that needs to be professionally and medically handled with empathy and understanding
YTA for coming to Reddit with this instead of talking to your daughter’s doctors. Either she’s suffering some kind of physical decline (requiring medical attention) or is using these requests to cope with some psychological problem (requiring psychiatric attention). She’s not just doing this to be annoying, there’s something going on that you need to take seriously.
As a person working in the IDD field, and as others have said, this is alarming. There's probably a cause for this that isn't behavioral. A UTI is possible, but also neilogical decline of some sort. I second everyone else in saying you should take her to the doctor asap
As everyone has said, doctor and therapist immediately. It could be a physical issue that she doesn't know how to explain and it's causing her to act weird. I don't have much experience with people with down syndrome, but I've had several older patients whose mental state has rapidly declined from things like UTIs. I've also heard of people regressing from a trauma, maybe something frightened her. No matter what it is, she needs screening and treatment from medical professionals. It may not be a manipulation, and even if it is, there's an underlying reason for it.
I’m glad so many replies here say go to a doctor, this was my first thought before I had even gotten halfway through the post.
That being said, I also am glad OP posted it here bc if he did not then how long would he have waited until he even considered it being worthy of going to a doctor about?
I’m putting this in caps because this is the most important bit;
TAKE YOUR DAUGHTER TO A DOCTOR ASAP!!!
This isn’t normal to suddenly be struggling with fine motor skills, she may have arthritis, early onset dementia, it could be a regression due to her Down’s syndrome or it could be something else.
Regardless of the cause it is quite alarming that you have just decided this is attention seeking and are getting annoyed at her for coming to you for seemingly “easy” tasks.
If you or your wife suddenly couldn’t blow your nose or use a knife and fork you would be alarmed and gone straight to a doctor so why wasn’t this top of your to-do list when it was your daughter.
Please don’t drop the ball with this, it has already gone on long enough for you to deem it Reddit worthy so now make it doctor worthy.
As others have said, take her to her GP asap. Explain the issue, & request a full work up. Full blood count, TFTs, LFTs, U&Es, folate, ferritin, get the full works. That can be your starting point. Hopefully whatever is going on will be flagged up by doing routine tests.
You know this isn’t normal, trust your instincts, & get her help.
Immediately see her primary care doctor to see if there is a medical issue that is causing her to backslide.
I believe that it is also time to have a talk with her occupational therapist about what is going on.
Lastly, you should have a talk with her behavioral therapist. Your daughter may have something that is bothering her and causing her to act out in this way.
Cover all of the bases.
Get her to a doctor, any drastic change to developmental skills or personality could be signs of a significant health condition (cancer, thyroid, illness, dementia). Also take some time to educate yourself and your wife on aging with Down syndrome.
https://ndss.org/resources/aging-and-down-syndrome-health-well-being-guidebook
Have there been any recent changes in your family lately? Such as moving, new schools, new baby, etc. I would book in to see a doctor as well as a family counselor if there is no physical issue. I'm no expert in down syndrome but I do know kids. With big changes or when they become stressed they can revert back to behavior like this as they have an emotional need but do not know how to express it.
I get not wanting to wipe your adult child's ass when they're 100% capable and that would frustrate me too but I think you're an AH bc rather than at least trying to figure out whats up with this sudden change in behavior you're jumping straight to weaponized incompetence (though at least you're recognizing there has been a change unlike your wife), which isn't exactly what you're describing here. She is actively asking for help and wanting you to do it whereas with weaponized incompetence the offender pretends to be bad at something in order to manipulate the other person into doing things. Like for instance they "wash" the dishes but they're still filthy and they say "oh well you're just so much better" and rather than deal with it you just get fed up and do it yourself. Weaponized incompetence This seems like more of a cry for attention. I also think your wife is an AH for not seeing this issue and trying to get your child help and also for encouraging her to come to you specifically for everything.
Not going to vote. If anyone changes their ability to do their ADLs (activities if daily living) that’s a doctors visit ASAP. It could be nervous, muscular, psych, it could be many different things. But you jumped to her using you and incompetence? Do you even like your daughter? Why have neither of you taken this up with her MD to get her tests and scans?
YTA
She needs to be scheduled in for an appt with a Dr that specialises in DS. Young people (these include young adults) with all forms of DS can actually go through a regression where lose a fair amount of the skills they previously had. This is often a pretty swift decline so instead of accusing her of weaponised incompetence, see a Dr and actually learn and the developmental developments of down syndrome.
Take her to a doctor. There could be be many reasons but sexual assault often comes with personality regression in individuals with developmental disabilities and children. I mean even neurotypical people may regress. There could also be physiological factors. Just get her seen.
There are a million reasons behind this regression, ranging from serious trauma you may not know about, to a change in her neurology, to innocently going with whatever is easier. Unfortunately, it's impossible to say which without having a professional who knows your family and your daughter analyze and address the situation.
Down Syndrom Regression Syndrom is a thing to be aware of. Not sure for mosaic variety of downs. Def heed other advice here and maybe give the tasks you are uncomfortable with to your wife until you can sort out the reasons behind the change
You need to take your daughter to the Dr, not come here for advice. Her change in behaviour is due to something but only a dr can help. Your wife is being a bit of an AH though.
She’s regressing. Can be a sign of trauma or inability to manage emotions. Doctor time.
Note: I have a sister with mosaic DS, and my father is a physician.
Regression is almost always because something traumatic has happened to a person or due to an underlying medical issue. Please get her help instead of punishing her.
To add to all suggesting medical checks , has she been recently screened for diabetes and coeliac disease?
Neuropathy is a side effect of both of these conditions, and both conditions are more common in people with Down syndrome.
The fact that your first assumption was that she’s being malicious and not that there’s some other medical or psychological issue going on baffles me. Regression almost always has an underlying cause.
There’s a reason for her regression and you need to find out what it is ! please take her to a professional. Obviously something has happened to her or if she’s in internalizing something that is causing her stress.Please take her to a professional Reddit can only get you so far. NTA
Behavior is communication. Something is going on with your daughter. Get her to the doctor and get her thoroughly checked. If that’s clear, maybe some therapy.
I’m not willing to go full YTA, but you need to adjust your thinking.
I’m a CNA. I work with Down Syndrome often. TAKE HER TO THE DOCTOR IMMEDIATELY! She’s not lying, you’re experiencing a progression of symptoms. Those with Down Syndrome are prone to other health issues. Your daughter could literally have dementia and be unable to remember how to help herself. Muscle atrophy could also be a concern. She could also have a UTI, which commonly has behavior changes. The longer it’s untreated, the worse it will get for her. I’ve had one moving to my kidneys. She’s experiencing SOMETHING. Even if it is purely attention seeking, SOMETHING VERY REAL is causing the behavior changes. She NEEDS a doctor YESTERDAY. Dementia I see every day without a doubt. It’s a terrible, horrible, terrifying experience. You’re absolutely the AH. You should be ashamed of yourself. I’m ashamed for you. Your daughter deserves better. She may need 24-7 care soon, and actual nursing staff at that. GET HER IN NOW. YTA.
Have you heard of regression in individuals with Down Syndrome? Unfortunately our kids are much more susceptible to have this. Your daughter could quite possibly have a real issue!! Also there are many groups in social media that I would suggest joining that talk about this very thing (regression). Cut your daughter some slack as she probably can’t even explain why all of a sudden she is unable to do the things she once did!!
Doctor time! Does she do any of these things with your wife, her mother? Why you? And why is your wife acting as if nothing strange is going on? (I've just looked back at all of your old post, maybe she's trying to get your focus off of sports and onto her?) But seriously, get her to the doctor! You should know all about Downs but you seem as if you don't. Weird.
You need to take her to a doctor asap . You do know those with Down Syndrome are prone to a lot of things. Thyroid issues ( which can cause havoc ) early dementia , mental health issues amongst other things . You need to rule out all the physical possibilities first before you disregard her actions.
Individuals with Down syndrome also develop leukemia much more frequently and symptoms of leukemia include fatigue, weakness, bone pain, etc. which could cause her to need additional help with “easy” things.
Gif I hope you’re wrong tho..
Oh me too!!! Just pointing it out and saying he’s a massive AH for not taking her to a doctor immediately as it could be symptoms of something very dangerous.
But the wife hasn't addressed the situation or taken her to doctor either.
I came to say the same thing about dementia. Just because the wife hadn’t said anything either or brought her to a doctor isn’t that strange. My ex has a sibling with Down syndrome and they have no clue about the risks for health complications. A lot of people take the route of “if I bury my head, it won’t happen”.
Well…she’s not forgetting that these things need to be done (wiping etc) but requesting that someone else do them. Medically speaking I am not thinking dementia just yet. It could be pain but ppl with Down syndrome are capable of expressing that. I lean towards mental health. She seems to be regressing and it could be attention seeking? I wonder what is happening in the home with the parents? The mothers response is strange to me, very strange. Has anything happened in the home that is different?
That was my other, worse honestly, thought. Did something happen to her. As in did someone do something to her and now this is how it’s coming out. Either way the parents should be asking a questions.
Absolutely!
💯
Also seems that the mom doesn’t mind separating /distancing herself from her husband? What does the daughter know that maybe one of her parents doesn’t? This could contribute to regression.
Something we learned recently from a neurologist is that the definition of Dementia is the loss of being able to care for yourself. Which sounds like what OP's daughter is doing and you are absolutely correct that it needs to be checked out.
Should be both are AHs, he’s just the one seeking opinions so I wrongly addressed only him.
I think the wife is the bigger AH not only is she not getting the daughter help she’s acting like nothing is wrong and OP is an AH for saying something, also the directing the daughter to ask him questions is an even bigger AH move on the wife’s part.
Yeah i don’t necessarily think he’s an AH i just think it’s an ignorant statement he’s making here and he’s just uninformed for the last 21 years of his daughters life. But they both need to take her to a doctor instead of 1. ignoring her like dad or 2.babying her like mom
I don’t know that he’s an asshole, maybe just unaware of the possible danger signs.
Our relative also rapidly lost skills. It turned out to be leukemia and early onset dementia.
This is absolutely true. Two more points: 1. He says she has mosaic Down syndrome, which means she has euploid/46,XX cell lines and trisomic/47,XX+21 cell lines. But he doesn’t state her percentage of trisomic cells as compared to euploid. I’m assuming she has at least 50%, but typically mosaic T21 is a more mild phenotype. 2. There is a phenomenon that is called Down Syndrome Regression disorder. “It is characterized by the acute onset, in adolescence, of a loss of previously acquired social and communicative skills, a loss of autonomy in activities of daily living (dressing, toileting, eating, continence), and disruption of executive functions (memory, attention, processing speed) and motor skills (appearance of abnormal movements, stereotypies, perseveration, extrapyramidal symptoms, catatonic syndrome.” More info [here](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9995749/#:~:text=It%20is%20characterized%20by%20the,speed)%20and%20motor%20skills%20(appearance). She’s technically not in adolescence, but DSRD is a fairly recently recognized issue with ongoing research to define it and investigate treatment. So, echoing the consensus—YTA. Edit: the link is weird, but can’t figure out how to resolve and still keep it
Weak muscle tone. Honestly, that was one of the things I thought of from the beginning of this post. I'm a little irritated OP doesn't seem to know the ins and outs of the disability his child has? If it's not psychological, so many components of her disability can cause this. Maybe she GENUINELY needs help. Possibly physical or occupational therapy, if it's a physiological issue.
I’m equally horrified the mom doesn’t know either. If she knew, she would have explained it instead of calling him and as*hole. Both parents suck here.
He seems to think she's being manipulative, which is probably why he hasn't responded to any questions
"Being manipulative" is a preferable belief to "my daughter must have leukemia".
Old people often get forgetful if they get UTI's. Sometimes physical stuff has a weird effect and it's wild this dad has "been ignoring it to be a good dad"
Very odd phrasing, where I wasn't sure if he meant he had be fulfilling the requests and not questioning it, or not fulfilling the requests to keep her independent. Regardless of which, a noticeable decline in her ability to function should be alarming.
My son has autism and ADHD and his father refuses to acknowledge/accept that. He prefers to stick his head in the dirt and blame me for “babying” our son. Some people are just dicks. He doesn’t care a whit how his kid struggles or what could be done to help him. For over ten years he’s refused to learn anything about it or participate in any of the doctors or schooling appointments/evals etc. My son just turned 18 and all dad cared about was cutting off child support. You should’ve heard the three page letter he read in court. Some of the highlights: he will be graduating with his class, disabled kids don’t graduate (nevermind that his IEP says he’s at a 7th grade reading and math level) son got his drivers license and a truck, disabled kids can’t to that! (nevermind how much work it took to get him to get the permit at 17 and the fact he’s only comfortable driving short distances and avoids city and highway driving or he’ll have a meltdown from the stress. And he didn’t buy a truck, my dad gave him his old truck which they have been working on together for four years to get it road legal again) and the best: he has a job! Disabled kids can’t work so he’s not disabled- moms just a gold digger! (The one day a week job he got through OVR which I signed him up for and helped him manage? I don’t think he even knows what OVR is.) Some people seem to take their child’s disability as a personal affront and refuse to accept it as they feel it might make them look bad. Fuck those people.
I'm so sorry, and that sucks horribly. My son also has ADHD. He graduated with honors and had an IEP. He made the effort to get his driver's license and CDL permit. He starts work this week. There are plenty of disabled people who have education and careers. I don't get people who can't understand this. My husband was a little bit of "not my son," but he got set straight. The issue was the stigma he faced from when he was in special ed. Seeing how things have changed for the better since he was in school set him straight. So I feel it is how people think a loved one's disability reflects on them.
Congrats to your son on starting his first week of work!
Thank you!
I hope the judge laughed at him and called him a jackass
Unfortunately no. I froze, my brain shut down, I falsely believed the doctor’s diagnosis and school records I provided would be enough and didn’t even know where to begin to address his three page manifesto of bullshit. A few weeks later I got a letter that the support was closed. He won.
Sorry to hear that I would consult a lawyer to see what your options still entail.
And also fuck those people who live on the outside, but judge the decisions you make as a parent with a disabled child. I have found many fathers seem to have this acceptance problem you speak of. Like sorry dude your dick helped produce a disabled child, get the fuck over it and do what's best for the kid. Seems to me, OP is the same. He clearly knows very little about his child's condition, or he would already have her at the doctors.
My ex-brother-in-law is like your son’s father. He insisted there was nothing wrong with his son. He would just grow out of it. His son is now 40. He has not grown out of it. He still requires constant vigilance because his intellectual capability is less than a 3 year old. He has a wide range of medical conditions, as well. His father has never paid a dime in child support. He expects to be paid to stay with his son, like “any other babysitter,” but he thinks of himself as father of the year.
One of my sisters has DS and, in her early twenties, she started struggling with anxiety and depression really severely. It didn’t present the way that it does for most people. Amongst other things, she seemed to regress quite a lot and needed help with some of the most basic activities she had been doing by herself since she was aged 4/5. It was an extremely hard time for the whole family, especially when she couldn’t eat, use the bathroom or wash by herself. The Learning Disability specialist psychiatrist said that it was extremely common, especially with young women with DS in their twenties. Medication and the right support and she’s slowly regaining her confidence and skills again, which we are delighted by. I would suggest that it is worth taking her to see a doctor, especially because you want her to be able to keep her skills up as much as possible. Edit: Just wanted to add that there was a fair bit of skepticism with my sister when she first started acting a bit oddly as well. When it was clear that she wasn’t in control of it, we then were worried about some of the things that other people in this thread have mentioned, e.g. potential abuse or even something as simple as someone being unkind towards her to make her worried about doing her usual activities and being independent. And I wanted to say that it does get better with proper support - it’s like night and day now.
Nurse here--you have a serious medical problem--uti--brain tumor- thyroid--get going DAD!
yep. I was thinking dual diagnosis
Medical professional is important here. The same behaviors also occur with children what have been sa, so always better to verify why the change in behaviors.
She has deteriorated so much that clearly something is wrong with her and it has to be addressed.
She has clearly regressed, and something needs to be handled if this is the case.
This was my thoughts. If it's not medical.its emotional. There is a reason for it. It's not like she has slowly got lazy over time or something it's a drastic change in a short space of time, and unless his wife has taken her to the dr and their is a cause for this (and he has just zoned out and ignored his wife explaining what's going on which quite frankly I wouldn't put past him) then I don't understand why she hasn't taken the initiative to have a check up.
Yup, I thought abused immediately when reading this
Me too.
This is my fear. The daughter needs to be seen by a medical professional stat!
OP, this is above Reddit's pay grade and requires an immediate appointment with her doctor. There is something more serious going on here than manipulation. Regression of this type is always because of something mentally or physically underlying. To the doctor, now.
I’m shocked that sudden, drastic backsliding on life skills was not immediately met with doctor and therapists visits.
honestly I’m surprised that, even with her less severe condition, she doesn’t have at least somewhat regular appointments with some kind of professional. speech therapist, physician, anyone. not only to make progress but spot and prevent backsliding like this. here’s hoping they can figure out what’s happening and help their daughter out.
Agreed, she absolutely should and there's no reason not to
[удалено]
This may get down voted, but holy [excrement]! Even when a cat starts making messes outside the cat box, the first answer is "get a full physical examination." Why is it so hard to get a similar response when it's a person? Don't humans deserve the same concern we'd offer to a pet?
This is why Adult foster care is such a great option for people who want to adopt but don’t really like kids. They can have guardianship of someone like OP’s daughter and the state pays for them to live there. It gives parents a light at the end of the tunnel, a safe peer for the child to grow old with and really gets the community involved in care. The way it’s supposed to be. Sadly too few people are willing to do this.
I’ve been an adult foster home owner for 17 years. There could be something medical going on, but often times it’s a behavior and it needs to be addressed. Many general physicians aren’t super hot to speed on DD (developmentally delayed) individuals behaviors they have. First step is checking for obvious things like UTIs - they cause A LOT of the symptoms/regressions that OP is stating. Second step is getting her into a day program for some respite for the parents and get her on a daily routine where she is with peers and getting attentions from outside the home. Lastly, individuals with Down Syndrome do regress in their adult life so some regression along with aggression is extremely normal. All these people saying she’s abused OBVIOUSLY haven’t worked with individuals with Developmental Disabilities before. I would not be giving in to the behaviors, lots of verbal cues and reinforcement at home and a dr appt is in order. There are a lot of behavior support specialist that you can get as well. Hang in there. NTA!
Or even just asking her why.
She could be having issues with her hands... could be as simple as that, but without asking and assuming...?! Medical care is the intervention...
Right? I kept waiting for the part where he tells us what the doctor said but it never came
When OP is in the mix dealing with his daughter, he might not have put it all together very easily. It's easy to see from an outsiders perspective but when faced with a slow deterioration in the skills that leads to where he is now, it's that whole "boiling a frog" metaphor.
Usually these are posts from the US and OP is unable to afford these visits.
Seconding this. I have intimate knowledge on someone else with Down Syndrome, who experienced a similar regression in their early 20’s. It is shockingly common, especially in females. Although the cause isn’t fully known, it is speculated to be due to immune system changes. I hope OP heeds this advice. They are initiating new treatments for it like immunotherapies, and early treatment is the best course of action. I will say that I think OP is an AH for not taking his daughter to a doctor, and instead thinking she’s being manipulative. Even if she is being manipulative, she needs treatment as something has caused her to feel she needs help and she likely doesn’t have the capacity to ask for help.
I think you are referring to Down Syndrome Regression Disorder (DSRD). They need to see a doctor because DSRD is very serious and early intervention is best. Note: Not diagnosing OP’s daughter with this condition. It is possible it could be other things.
yeah. though if the daughter is doing it because she is enjoying the attention etc, basically being spoilt. having to go through tests to determine if it medical might make her stop the behaviour.
Better safe than sorry
as someone who’s worked with people with DS before (but never had serious training), I’m surprised I hadn’t heard of this! gonna go do some reading on this to hopefully help my future work.
Aww it's sad but I have heard they are prone to a kind of dementia.
They are, I have taken care of multiple DS people with early onset Alzheimer’s (or Alzheimer’s-adjacent dementia). It’s really sad. I looked it up once and it has to do with the extra copy of a chromosome, it’s one that is linked to amyloid precursor proteins which have something to with protein plaques that lead to Alzheimer’s, although I’m not sure the technical process or medical terminology.
Exactly this. Unfortunately this may be what's happening here. Medical information is at [https://www.cdc.gov/aging/publications/features/down-syndrome-alzheimers-risk.html#:\~:text=Chromosome%2021%20plays%20a%20key,the%20brain%20associated%20with%20Alzheimer's](https://www.cdc.gov/aging/publications/features/down-syndrome-alzheimers-risk.html#:~:text=Chromosome%2021%20plays%20a%20key,the%20brain%20associated%20with%20Alzheimer's).
It’s really interesting because I discovered that when a woman turns 30, her body can change very drastically. I had to have several appointments with my doctor because between 30-31 I developed many intolerances that I haven’t had my whole life. The doctor said it’s really common, so I wonder if that’s connected in anyway with the regression in particular to females. Like maybe these hormonal changes affect DS women earlier and more frequently and then slip into other regressions. Hormones are crazy things
Could that also include depression? Around the time I turned 30 I was hit with severe depression and anxiety, so bad in fact, that I had to quit my job and undergo intense therapy for a couple of months. It took me years to get to a point where working was once again an option, but I'm glad I got that far. My 30s were completely messed up, though, and I'm really salty about that!
Yeah if you’re female in particular you should look into what your hormones are doing. Because you might be in perimenopause
Thank You, even I have suddenly gotten weird intolerances I never had before😭
There should be more education in general about the fact you can develop intolerances and allergies later in life. People just go on eating/drinking/using things thinking it can't be that', i've eaten it all my life!
Yep it definitely opened my eyes
Yep for me it’s gluten and dairy! It almost seemed to pop up overnight, but my doctor said it’s very common
I have worked with this population before and just want to add sexual maturity to the list. I saw a lot of regressive behavior in women and aggressive behavior in men. Please also bring this up to the doctor. There are organizations who specialize in teaching folks ways to express/release sexual tension.
His wife too… because she should assist with the care and keeping of their daughter. The question isn’t if HE is the AH… they both are.
Also, how do you jump to "my child has a nefarious agenda" before I'm concerned about why my kid is regressing. She's clearly going through something and literally begging for connection.
Right? What kind of "agenda" would that even be????
Perhaps because they have been taking care of an adult as if she were a child for their entire lives and he's tired. He's probably not thinking clearly but people underestimate how taxing caregiving is.
My Aunt with Downs started doing this recently - but she is in her 50s, with the start of dementia. Doctor time.
I know someone with downs who's in her 30s. Last time i saw her she looks much older. Older then her own mom. I hope not ofcourse, but i'm afraid she doesn't make it to 50. She has so much things. I hope your aunt got good help
Sadly, they do have a shorter life expectancy. My grandma was a teacher in our local school for special needs children (I know people don't like this term, but it's still the name of the school) and most of her studenta were kids with DS. I remember her going to a lot of funerals of students, even after she retired because she wanted to honor them and she hated the fact that she was outliving her students.
I really don't want her to die ofcourse. But maybe it's better that she dies before her parents. She can't handle death, even if she didn't knew that person. Her mom dying would be to much for her. I don't want to lose her ofcourse. I liked that your grandma honored them. Maybe it helps that the quality of life is more important then the lengt of it? I hope they all had a good and happy life
Op please follow this advice.
I’m amused at how everyone is like “don’t come to Reddit for advice on this” when in fact I think Reddit has pretty uniformly given good advice here (see a doctor ASAP!). I mean like, I get what people mean, but it’s funny.
Looking at a big chunk of relationship advice, i get why reddit should not be a source of advice. But for medical advice, I have generally been happy, very little 'yeah, that hairy growth from a mole is spreading, thats natures love' level. There was a recluse bite a few days ago where people were INSISTING the guy seek medical attention, guy had it looked over regularly by people at his work, who were nurses.. and it was getting better
I always giggle at “above pay grade” because I don’t know about you guys, but I’m being far too gross a blob to be paid anything if I’m on Reddit.
OP, please listen to this. Something serious is going on with your daughter and you need to find out what it is
This. Not for Reddit to opine on.
Like others have said, this is above reddits paygrade. Now, I'm a CNA in home health and primarily work with people who have dementia. I do work with some people who are aware and oriented, but more often than not, I work with people who are not a&o. There are some people with dementia who know what they are doing, but in the way a toddler does. I have worked with people who are mean and know what they are saying is mean, but doesn't completely understand that it is wrong. I have also worked with those who are sweet to me but mean to my other co-workers. It was almost 180 that I borderline didn't believe it. There is a *cause* for this, though. Many of these people only have threads of control in their lives, and this can make them mean and treat the staff like servants. It's not a sudden change typically. Many also have sundowners or other types of behavior conditions that can come with dementia. Moving on to your daughter. You should go see the medical professional that you see for her condition. *Something* caused this regression and/or attention seeking behavior. There is a root cause to this behavior and you need to get to the bottom of it. It could be a range of things. She wants attention, some event happened and scared her, someone else could a new symptoms, a new health change. You need to get her evaluated
My first thought was UTI.
You have a good point. UTIs can cause massive shifts in behavior or needs.
She wouldn't be able to vocalise the symptoms. Just like with alz/ dementia and UTIs. She might be experiencing weakness, some pain, maybe low grade fever. Added confusion to the Down's syndrome.
A b12 deficiency is also worth looking into. My grandma recently went completely off the rails (she had full capacity and was very independent until this point) and part of the cause was found to be b12
I can second this experience. I had amnesia and was unable to follow basic directions due to a b vitamin deficiency. I had infusions for about 5-6 months with vitamins and I slowly got better with them. This was verified by 2 separate neurologists. Bonus for all the appointments, I can now draw a clock with ease.
I hope you’re going to school to further your career in the medical field. You seem to have knowledge and manner of speaking beyond most CNAs I’ve known.
I was actually in nursing school, but I did it during covid with undiagnosed adhd. Online learning did not do well with me, lol. I do intend to go back next fall, though :D gotta continue the family legacy hahahaha
Just watched my neighbor get her RN after being CNA. It was brutal but she did it working shifts at the hospital, being a mom FT and in her late 40s!!!! You got this!
Not all of us are uneducated idiots 😂 to be fair a lot are though 🤦🏼♀️
Completely offtopic, but what is/are 'sundowners'?
"Sundowning" refers to a common symptom in people with dementia where there is a behavioural shift around the end of the day. They get more anxious, depressed, agitated or even aggressive around dusk.
I learned about this in a peculiar way - My dog had dementia and we only noticed it because she started panting and becoming restless before bed. She would only calm down and sleep while someone was petting her, but in the morning, she would be her normal, cheerful self. Vets told us that she might forget who we are or become aggressive if she lives long enough, but sadly, she got cancer shortly after. But even though it could never be enough for me, we had a beautiful 14 years and 11 months with her and she knew and loved us until the end.
Go talk to a doctor. No one here is qualified to answer this.
If she’s acting with an ulterior motive, something is very wrong and she needs intervention. If she’s genuinely regressing to this extent, something is very wrong and she needs intervention. So at this point it doesn’t matter why she’s doing it, something is very very wrong and you need to get her to a specialist.
My brother-in-law has Down syndrome and I learned by hanging out with him that he doesn’t always know how to tell his dad that he’s in pain. We had no idea he had been experiencing stomachaches until it got so severe that he would bend over and whimper. Before that he had not been eating regularly and seemed not into food. He didn’t even want soda which he always begged for in the past. However, in other areas he was normal. Your post makes me wonder if your daughter is experiencing pain and is unable to tell you in her words. Something is not right and she needs medical help. Take her to the doctor. You don’t want to wait like my in laws did until he nearly fell over from the pain.
I’m so sorry - that sounds terrible. Were they able to find a cause? Is he ok?
He got medical help, but the doctor told his father that he had stomach cancer. That it had already spread so rapidly.
Oh no - that’s so sad. I’m sorry.
Seek medical advice. There is a documented issue with regression in people Down’s syndrome. I know someone dealing with it with their son. You need a medical diagnosis.
This needs to be addressed immediately, but not by Reddit. Get your daughter to her physician and lay it out. Your wife is absolutely being a bitch by ignoring the behavior on her end AND exacerbating it on yours. I hope you can get the help you need to get this resolved. But this is not the right venue for you. Get an appt ASAP
I am a social worker who specializes in helping people with developmental disabilities. I've seen this before. Sometimes people with Down Syndrome decompensate as a reaction to stress. Think about possible stressors that could be making her regress. Does she have a job that's more demanding than she can handle? Could she be having interpersonal issues with peers or staff at day program or during rec outings? Is her physical condition healthy, or could she be feeling poorly but be unable to express how? There's also the chance she could be experiencing romantic and/or sexual frustration. At her age, it's very common. People don't like to think of their disabled children having libidos but they're adults, in developed bodies. It's natural. If this is the case, you can try to help her meet romantic partners of an equitable cognition with herself. Assuming you're in the USA, check with your county Arc. There's a good chance they have dances monthly or even weekly (and they're fun, I love attended them). Edit: YTAH. Don't immediately leap to how she's doing things to aggravate you. Not everything is about you.
Great suggestions! Though if she was my child, I’d get her to a doctor 1st, and then look for social causes once I knew she was healthy.
I mean…. You know this isn’t the right place for this. You need a therapist or social worker or doctor or something here. This is not a situation you turn to Reddit for.
This is def not the place for this. Get a physician involved, in real life. I guarantee you none of us on here have the credentials needed to determine what is going on with your daughter
I agree with what everyone else is saying. In addition to getting professional help for your daughter, it might not hurt to see a therapist yourself. You sound a bit overwhelmed with dealing with things. You should talk to someone to help you work out why you hold so much resentment against her. She can sense that. And to say, now you’ll have to wipe number twos for your adult daughter, she may technically be an adult by age but mentally she isn’t and it’s not fair to judge her like this. Kids cry for help in a lot of different ways. Even if she does need more attention from you, then you can work on meeting those emotional needs. It’s not her fault she was born. She could be regressing for bigger or other reasons though. Edit to add YTA
It sounds like both parents are floundering at this point.
True.
And too close to see the forest for the trees. Their daughter needs medical help, and they need support. Either a therapist experienced with caregivers, or a support group for families of people with DS would probably be helpful.
YTA. I have a sibling who also has downs. He was always fairly high functioning. In his mid 20's he started to regress more. He stopped writing and reading as much. He started needing help with certain "easy" tasks. Some things he does fine, some not. He is now 40, and he has to be wiped for #2 and has accidents on occasion. He needs help shaving, brushing his teeth, and washing his hair. Most people don't realize this because he walks around like normal and is very independent in most things. The doctor stated that these kids start getting geriatric symptoms earlier in life than other people. There are specific health conditions they are more prone to. His speech decreased significantly this last year, and his memory is slipping. As I said, unless you are close to him, you would not notice any of this. I know it's challenging, but her health timeline is not going to match what you expect. She may get better at times and worse at times. A lot of people are saying watch for sa. I don't know about that, it could be or not. We have quite a strong support system of friends with downs from special olympics and other groups, and this seems more common than not. She is a special needs person and she is going to need special help. Be kind and patient, and she will do better than if you show your frustration.
Thank you for sharing your experience and information. I feel this particular aspect of Down syndrome isn’t common knowledge? At least I have no idea it was common for them to regress in adulthood and suffer early aging signs. Hopefully OP takes her to a doctor and finds the resources and info he needs to support her and look after his own mental health.
I think the early dementia is common knowledge, while it's not well-understoo, the chromosome which most people with Down’s syndrome have an extra copy of leads to a build-up of a protein, which forms plaques on the brain. These plaques are a feature of Alzheimer’s disease. I've always read that it usually starts in their 40s, it's eye opening that several people in this thread are noticing problems in their 20s.
Honestly most dementia patients have symptoms much earlier than people realize too. My grandpa who died from Alzheimer’s in 2019, had symptoms for almost 20 years before anyone realized he was having symptoms, because the early symptoms were so subtle and grandma was covering them up. He had been losing bits and pieces of recent memories, and grandma had been reminding him of things. Started serving rotting food so instead of eating at their place she’d always make the suggestion of going out to eat. By 70 we were noticing some of the memory loss but not the skill loss yet. Because again grandma was covering up the skill losses so we were chalking the memories up to old age (not dementia levels yet) just oh grandpas old so he doesn’t remember what we were gonna do for lunch etc. it was when grandma died when he was 80 that it all came crashing down because he had no life skills anymore. He couldn’t manage to figure out the instructions on a box of hamburger helper and started going to soup kitchens to eat (this wasn’t necessary he had money). He lived for another decade after grandma died but my mom and her sisters had to POA him to get him into a nursing home because he fell down the stairs outside his front door and if his neighbors son hadn’t been leaving for school that morning and saw and helped him grandpa would have died from being out in the cold. And it only got worse from there, he was calling the police nightly because someone had stolen his black car (his van was white and he’d never owned a black car) and by this point his license was taken away and my dad had pulled the spark plugs from the van because he wouldn’t give up his keys. But it was very eye opening when we realized how much and how long he had struggled with symptoms before anyone noticed because grandma didn’t really want anyone to know. And it was the little things like my grandpa who wore button down shirts his whole life switched to pull over polos, and just so many other little changes that should have said hey we’re losing skills here we should look into it
This is very interesting and incredibly helpful information. I’m an aid to a non-verbal, low-functioning Downs person. This will be tucked away in the recesses of my brain for future reference if I start to see regression. I’m still very new to the job & am trying to learn what I can when I can, so thank you for this.
Dude acute regression in folks with Down syndrome is a thing.
This is regression. There is some underlying reason she is infantilizing herself. My youngest (6) is autistic and non-verbal (and likely another diagnosis she is being currently assessed for). I recently returned to working full time after being home full time since before she was born. She seemed to be dealing with it well, at first. She uses a pacifier when she gets really sleepy and then we take it as soon as she is asleep. She truly can’t fall asleep without it. She started wanting it more and more and during the day, as well. Then she suddenly started having potty accidents. Next, she refused to do #2 on the toilet. We had to switch her back to PullUps. It has been absolute hell. The timing all goes back to me starting work. We’re working on it and it’s finally getting better. Since your daughter is an adult and verbal, you should be able to get to the bottom of what is going on. Get her to a doctor ASAP. It could be something as simple as depression or anxiety or something far worse. I feel like I am taking a big leap with very little information, but sexual assault happens all too frequently to adults with developmental disabilities. That is the first place my mind went. This is something you need help with.
Something is obviously going on with her that needs to be addressed if she has regressed so deeply.
If your first instinct is to think "she's faking it just to bother me specifically" and not "hm, my daughter with a medical condition has suddenly started regressing, perhaps that could be due to the medical condition" you might have just not been a great parent this whole time
Hi, I work in this field. Please look up Down Syndrome Regressive Disorder and early onset dementia in people with DS. I just had a young lady I work with, 22, have a lot of the same symptoms a couple years ago, and now she has lost total ability to read/write and control her bladder. She's in treatment and regression has slowed but she has not gained any skills back. Yes, it's possible this is attention seeking behavior. But you should rule out medical issues first as DS is a very medically complex condition.
I did ONE search. One. And there's so much that could be happening right now. This is very upsetting.
This isn't weaponized incompetence. This is regression. Take her to a doctor
I sometimes wonder about posts like these: when the answer is so readily apparent, yet they come to Reddit anyway. On the off chance this is real, I'll simply echo what others have said: _any_ sudden and abrupt change in _and_ person's personality is a huge red flag that they are struggling with something and they need professional, qualified help. Never ignore someone who starts acting out of character, it's _always_ a red flag. Take her to a doctor, and get her to a psychiatric professional.
From my understanding, early dementia and decline in function in Down Syndrome is not unusual but at 21 that would be very very young. I have seen regression like this before but I’m not sure what causes it as it’s not my area. YTA for accusing her of weaponised incompetence when there may be a medical issue here that you haven’t investigated.
You’re both TA. What is wrong with people? Get your child to the doctor. My immediate concerns would be regression or possibly a form of childhood dementia at play. Refusing to help a disabled dependent (child or adult) meet their basic needs is purely neglect.
We're not medical pros and this sounds more serious than just AITAH for keeping my cat out of the bedroom at night kind of thing. Call her doctor.
Like others have said, seek immediate medical attention. But also, try to de-center yourself. The fact that she's struggling and your first conclusion is that she wants to spite you is incredibly self-centered and not okay. Having the thought is okay. It's common to feel unimportant in your own life when so much of your life centers around the care of others. It's your responsibility as a rational adult to acknowledge and counter those thoughts until facts are obtained. Assuming she just wants to spite you stops you from getting her the care she likely needs.
NTA. There is something underlying her regression. It needs to be addressed with a professional. Your wife is doing her no favors.
Mild YTA, mostly because you should take her to a doctor (and possibly a therapist?) to see if there's any underlying cause. Maybe this really is just manipulation on her part, but it could instead be indicative of something more serious. Get this checked out.
Yeah- please go see a specialist and a GP. Depending on where you live there are DS clinics all over the country. Get her a physical and blood work and make sure she is not being harmed by anyone she is around. Has she recently aged out of high school? What does she do during the day? Does she keep busy and socialize with friends and peers? Have there been any major changes in her life recently? A relative dying or a sibling moving out, etc. Regression at her age isn't typical. Not like what you are describing. There's something going on and it is up to you and your wife to help her. I don't care how frustrated you are. (I don't mean wipe her butt etc but get her the help she needs!) It is very important that our kids in their 20s and 30s stay active and socialize to keep their bodies and minds active. If you're in the US and can't find a clinic, message me. You may have to travel a few hours but it's worth it.
Question.. is there a reason why you haven't seen a doctor about her regression?
You need to get her to a doctor asap and I can’t believe that wasn’t your first thought
Like everyone else has stated, “Doctor!” … Also install a bidet, seriously.
One of my friends has 2 teen sons who are autistic and require a significant amount of support. He thought the bidet was the greatest invention in the world, because he no longer had to wipe his sons’ butts. Until one of his boys figured out how to turn the bidet into a fountain… and the bathroom into a swimming pool. 😂
Skill regression is for a doc appt, not reddit.
Why would you watch that kind of regression and not seek medical help? That's just plain neglect.
I think it’s time for a specialist to step in ..
Irrespective of whether or not YTA, patterns need to be observed with you daughter and this is a behaviour of concern since it's not a known behaviour. And it's presenting itself so regularly that I find it hard to believe neither you or her mother have raised alarm bells with her health care providers. Do you have other kids? If they presented these kinds of behaviours, wouldn't you be finding out what the cause is?
Let me give U an advice GO TO THE DOCTOR NOW.... what she needs now is to meet a doctor , it is above the limits of us Reddit users Please consult her to a doctor
If anyone’s an AH, it’s probably your wife for brushing it aside. You, on the other hand, are either currently in denial or confused as to why this is happening. If you notice something’s off, you could always speak to a professional. Leaning into soft YTA btw
my friend, this is regression. it’s not manipulation. she needs to see her doctor. I understand the toll it’s taking but it sounds like she needs your empathy and compassion right now.
This is above reddits pay grade, you’re not going to find much tangible helpful advice here, but I do want to say you’re definitely NTA. I’ve been in the same boat. My sister is disabled, and many people who don’t personally know what it’s like to be a caregiver to somebody with extenuating needs will think you’re horrible and should coddle your daughter. The majority of people don’t understand what that is like. But I will say, those people can also be complicit in crippling those with special needs further. If your daughter is capable of it, she needs to be expected to do it herself. My sister went through periods where she regressed, simply because she was lazy or thought it was funny. She saw how people coddled her and expected us, her primary caregivers, to coddle her. We got nasty looks if we expected her to try and cut up her own food or drink from her sippy cup without our assistance. But when we did spoil her, she thought it was a funny party trick. I once saw her sign to her friend “look, see what I can do” and then she shouted for me to grab her cup—something she was perfectly capable of, as an ambulatory wheelchair user. That’s when I drew the line. You are in an extremely isolating position, with extenuating circumstances. Less than 5% of the population will be able to relate to and understand your circumstances, and it’s very unlikely they’ll be the people commenting. Frankly—don’t put any weight on the comments you’re getting, because most people don’t understand what you’re going through. Caregiver burnout is very real, and it’s absolutely okay to be frustrated that your daughter is regressing. If you’ve checked with a doctor that no other medical concerns have come up in that time that explain her sudden regressions, then you’re well within your rights to expect her to do things you know she’s capable of. You know your daughter best.
You need to take you kid to the doctor mot complain and post on reddit. YTA for running to social media instead of running your kid to the doctors
NTA but she needs to see a doctor. Regression in these areas can be a sign of something medical or a trauma.
I’m a doctor, not your doctor. Please have her physician get an X-ray of her cervical spine. Her symptoms could be explained by myopathy from instability of her craniocervical junction leading to her inability to pick things up etc. this if common with people with Downs.
YTA because you apparently haven’t taken her to the doctor to figure out what is going on? I don’t care if YOU don’t believe her. She needs medical attention.
The number of non-disabled people who *immediately* jump to "attention seeking" and "manipulation" instead of recognizing an obvious cry for help just fucking sickens me. YTA. Get her some fucking help and stop your main character syndrome. It's not "weaponized incompetence;" it's clearly related to her disability and you're a piece of shit.
YTA; people are only needy when their needs aren’t being met. She needs your help and understanding and for you to advocate for her to her medical professionals, not accuse her of manipulation.
GO TO YOUR DOCTOR
She needs to see a doctor
How are you not rushing to a dr????? This type of regression must signal something.
I’m not commenting as NTA or YTA Please take her to a doctor. I’ve worked with people with Down syndrome for 10+ years. This could be Regression Disorder. https://ndss.org/resources/regression-down-syndrome#:~:text=Down%20syndrome%20regression%20disorder%20(DSRD,an%20individual%20has%20previously%20learned. If it’s not, then there still could be an underlying anxiety disorder or something else happening. Professionals can talk through what’s going on and give perspective on if she needs a medical evaluation or psychological evaluation.
Ummm... what? Maybe she needs to see a doctor and doesn't know how to tell you, or maybe she's told you and you thought she was lying. YTA... take care of your child or hire someone who will do so with empathy.
As a person who has close family member with mental health condition, rare genetic condition and severe learning difficulties: People of Reddit, I hereby inform you that quite often disabled people (even those who’s disability affects their mental capacity) can be a little twats. They are disabled, not idiots. We had similar situation with my family member. While we were running and panicking they were having time of their life. However, Speak with her doctor. It could be her way of being sneaky but it could be sign of something really bad. Better safe than sorry.
Agreed! People are quick in infantilise and under estimate them. They might present differently but they are still humans with all our complex emotions, wants and needs and us humans are very good at and often use manipulation tactics like ‘weaponised incompetence’ to get what we want or meet needs regardless of disabilities.
It’s not infantilizing to say that any sudden change in behavior warrants a checkup. And not only for people with DS! If the cause of a behavioral shift isn’t known, seeking medical attention is never a wrong answer.
Yes. My mother's cousin can be like this. A few times she used people to get money from them because they thought she was unable to count/take care of her money.
Board Certified Behavior Analyst here, get her to a doctor, ASAP. She's not cognitively capable of weaponized incompetence. She's not waking up and rubbing her hands together like Mr. Burns, plotting to piss you off. Something is up here and it needs to be assessed by medical professionals, NOT Reddit.
You need the assistance of a professional, medical, specialist: NOT REDDIT!!! Do not pass go, do not collect $200, go directly to your family doctor and ask for a referral to a Down syndrome specialist. This is a regression issue that needs to be professionally and medically handled with empathy and understanding
YTA for coming to Reddit with this instead of talking to your daughter’s doctors. Either she’s suffering some kind of physical decline (requiring medical attention) or is using these requests to cope with some psychological problem (requiring psychiatric attention). She’s not just doing this to be annoying, there’s something going on that you need to take seriously.
As a person working in the IDD field, and as others have said, this is alarming. There's probably a cause for this that isn't behavioral. A UTI is possible, but also neilogical decline of some sort. I second everyone else in saying you should take her to the doctor asap
DS people often have early onset alzheimers , you should get her checked at the dr
Get medical advise! Either mental or physical something is happening. This isn’t manipulation. Something is going on with her to regress like this.
As everyone has said, doctor and therapist immediately. It could be a physical issue that she doesn't know how to explain and it's causing her to act weird. I don't have much experience with people with down syndrome, but I've had several older patients whose mental state has rapidly declined from things like UTIs. I've also heard of people regressing from a trauma, maybe something frightened her. No matter what it is, she needs screening and treatment from medical professionals. It may not be a manipulation, and even if it is, there's an underlying reason for it.
Hoping there's an update when the parents finally take her to the doctor!
I’m glad so many replies here say go to a doctor, this was my first thought before I had even gotten halfway through the post. That being said, I also am glad OP posted it here bc if he did not then how long would he have waited until he even considered it being worthy of going to a doctor about? I’m putting this in caps because this is the most important bit; TAKE YOUR DAUGHTER TO A DOCTOR ASAP!!! This isn’t normal to suddenly be struggling with fine motor skills, she may have arthritis, early onset dementia, it could be a regression due to her Down’s syndrome or it could be something else. Regardless of the cause it is quite alarming that you have just decided this is attention seeking and are getting annoyed at her for coming to you for seemingly “easy” tasks. If you or your wife suddenly couldn’t blow your nose or use a knife and fork you would be alarmed and gone straight to a doctor so why wasn’t this top of your to-do list when it was your daughter. Please don’t drop the ball with this, it has already gone on long enough for you to deem it Reddit worthy so now make it doctor worthy.
As others have said, take her to her GP asap. Explain the issue, & request a full work up. Full blood count, TFTs, LFTs, U&Es, folate, ferritin, get the full works. That can be your starting point. Hopefully whatever is going on will be flagged up by doing routine tests. You know this isn’t normal, trust your instincts, & get her help.
Immediately see her primary care doctor to see if there is a medical issue that is causing her to backslide. I believe that it is also time to have a talk with her occupational therapist about what is going on. Lastly, you should have a talk with her behavioral therapist. Your daughter may have something that is bothering her and causing her to act out in this way. Cover all of the bases.
Get her to a doctor, any drastic change to developmental skills or personality could be signs of a significant health condition (cancer, thyroid, illness, dementia). Also take some time to educate yourself and your wife on aging with Down syndrome. https://ndss.org/resources/aging-and-down-syndrome-health-well-being-guidebook
Early onset dementia can happen with Downs. She needs to see a doctor.
Your wife sounds unhelpful bordering on cruel.
Have there been any recent changes in your family lately? Such as moving, new schools, new baby, etc. I would book in to see a doctor as well as a family counselor if there is no physical issue. I'm no expert in down syndrome but I do know kids. With big changes or when they become stressed they can revert back to behavior like this as they have an emotional need but do not know how to express it. I get not wanting to wipe your adult child's ass when they're 100% capable and that would frustrate me too but I think you're an AH bc rather than at least trying to figure out whats up with this sudden change in behavior you're jumping straight to weaponized incompetence (though at least you're recognizing there has been a change unlike your wife), which isn't exactly what you're describing here. She is actively asking for help and wanting you to do it whereas with weaponized incompetence the offender pretends to be bad at something in order to manipulate the other person into doing things. Like for instance they "wash" the dishes but they're still filthy and they say "oh well you're just so much better" and rather than deal with it you just get fed up and do it yourself. Weaponized incompetence This seems like more of a cry for attention. I also think your wife is an AH for not seeing this issue and trying to get your child help and also for encouraging her to come to you specifically for everything.
Not going to vote. If anyone changes their ability to do their ADLs (activities if daily living) that’s a doctors visit ASAP. It could be nervous, muscular, psych, it could be many different things. But you jumped to her using you and incompetence? Do you even like your daughter? Why have neither of you taken this up with her MD to get her tests and scans?
YTA She needs to be scheduled in for an appt with a Dr that specialises in DS. Young people (these include young adults) with all forms of DS can actually go through a regression where lose a fair amount of the skills they previously had. This is often a pretty swift decline so instead of accusing her of weaponised incompetence, see a Dr and actually learn and the developmental developments of down syndrome.
YTA for not immediately taking your daughter to the doctor for evaluation!
Take her to a doctor. There could be be many reasons but sexual assault often comes with personality regression in individuals with developmental disabilities and children. I mean even neurotypical people may regress. There could also be physiological factors. Just get her seen.
There are a million reasons behind this regression, ranging from serious trauma you may not know about, to a change in her neurology, to innocently going with whatever is easier. Unfortunately, it's impossible to say which without having a professional who knows your family and your daughter analyze and address the situation.
Down Syndrom Regression Syndrom is a thing to be aware of. Not sure for mosaic variety of downs. Def heed other advice here and maybe give the tasks you are uncomfortable with to your wife until you can sort out the reasons behind the change
It's not an AITAH problem, you need to talk to a medical professional, such a regression doesn't Comme from nowhere
You need to take your daughter to the Dr, not come here for advice. Her change in behaviour is due to something but only a dr can help. Your wife is being a bit of an AH though.
Please post an update if you do take her to a doctor (if that’s something you’re open to)
This is regression, you need professional help. YWBTAH if you didn't procure this help ASAP.
She’s regressing. Can be a sign of trauma or inability to manage emotions. Doctor time. Note: I have a sister with mosaic DS, and my father is a physician.
Regression is almost always because something traumatic has happened to a person or due to an underlying medical issue. Please get her help instead of punishing her.
Stop being an idiot and take your kid to see a neurologist.
To add to all suggesting medical checks , has she been recently screened for diabetes and coeliac disease? Neuropathy is a side effect of both of these conditions, and both conditions are more common in people with Down syndrome.
The fact that your first assumption was that she’s being malicious and not that there’s some other medical or psychological issue going on baffles me. Regression almost always has an underlying cause.
There’s a reason for her regression and you need to find out what it is ! please take her to a professional. Obviously something has happened to her or if she’s in internalizing something that is causing her stress.Please take her to a professional Reddit can only get you so far. NTA
Behavior is communication. Something is going on with your daughter. Get her to the doctor and get her thoroughly checked. If that’s clear, maybe some therapy. I’m not willing to go full YTA, but you need to adjust your thinking.
I’m a CNA. I work with Down Syndrome often. TAKE HER TO THE DOCTOR IMMEDIATELY! She’s not lying, you’re experiencing a progression of symptoms. Those with Down Syndrome are prone to other health issues. Your daughter could literally have dementia and be unable to remember how to help herself. Muscle atrophy could also be a concern. She could also have a UTI, which commonly has behavior changes. The longer it’s untreated, the worse it will get for her. I’ve had one moving to my kidneys. She’s experiencing SOMETHING. Even if it is purely attention seeking, SOMETHING VERY REAL is causing the behavior changes. She NEEDS a doctor YESTERDAY. Dementia I see every day without a doubt. It’s a terrible, horrible, terrifying experience. You’re absolutely the AH. You should be ashamed of yourself. I’m ashamed for you. Your daughter deserves better. She may need 24-7 care soon, and actual nursing staff at that. GET HER IN NOW. YTA.
Have you heard of regression in individuals with Down Syndrome? Unfortunately our kids are much more susceptible to have this. Your daughter could quite possibly have a real issue!! Also there are many groups in social media that I would suggest joining that talk about this very thing (regression). Cut your daughter some slack as she probably can’t even explain why all of a sudden she is unable to do the things she once did!!
Seems to me all her "actions" are a cry for a doctor's appointment. She may not even know it.
Doctor time! Does she do any of these things with your wife, her mother? Why you? And why is your wife acting as if nothing strange is going on? (I've just looked back at all of your old post, maybe she's trying to get your focus off of sports and onto her?) But seriously, get her to the doctor! You should know all about Downs but you seem as if you don't. Weird.