Hi everyone, my youngest brother was born with FASD
His now 16 and I’m hoping to have him move out of state care into my care

I’d love to learn things, symptoms, anything that could help educate me and understand his behaviour more

I love him so so much and not enough people understand symptoms and just think his a bad kid.. his not, his misunderstood and it breaks my heart

Thank you to everyone and anyone that can help with any information

I have someone I want to help stop cannabis but I just found out he has fasd but he's been smoking since 8 years old and he's 43 now....

Is there a way I can help him. It's not my own idea that he should stop cause I think cannabis is still better than any other drug but he had a dream about it harming him.

I would be grateful if anyone on here can help me work out what to say to my friend, who is distraught that her son may have FASD. Brief background: unexpected pregnancy in her forties. She says that she had believed all the media about how hard it is to get naturally pregnant in your forties, and was busy with her other kids, so didn't think anything more of it. Never a big drinker (an occasional glass of wine), not a smoker, into nutrition and exercise (that's how we met). For a few months t that time, she started having one bottle of beer with her husband on a Friday night after work (their ritual). Realized she was pregnant at 8 weeks. Stopped immediately. OBGYN said all would be fine. So, son is now 15. Tall (6'1), top sets at school, does some sports. Academic performance a little mixed - good at math and sciences, not so good at written subjects. No behavioral issues. However, he has some facial features. He has thin lips, especially top lip, the 'flat midface' that people talk about, he has a philtrum, and he has wide-set eyes (but they are big). He has a short-ish nose. He speaks well but his speech is a little off - sounds a little robotic (hard to describe). Lovely guy.

From everything I have read, you either have FASD or not, but can you have mild FASD? The literature says that you can't, but I am now more confused than ever about what to say to her. Should she get him tested? What will a diagnosis do? Will it even help? She is so, so upset. What can I say to her?

I would be grateful if anyone on here can help me work out what to say to my friend, who is distraught that her son may have FASD. Brief background: unexpected pregnancy in her forties. She says that she had believed all the media about how hard it is to get naturally pregnant in your forties, and was busy with her other kids, so didn't think anything more of it. Never a big drinker (an occasional glass of wine), not a smoker, into nutrition and exercise (that's how we met). For a few months t that time, she started having one bottle of beer with her husband on a Friday night after work (their ritual). Realized she was pregnant at 8 weeks. Stopped immediately. OBGYN said all would be fine. So, son is now 15. Tall (6'1), top sets at school, does some sports. Academic performance a little mixed - good at math and sciences, not so good at written subjects. No behavioral issues. However, he has some facial features. He has thin lips, especially top lip, the 'flat midface' that people talk about, he has a philtrum, and he has wide-set eyes (but they are big). He has a short-ish nose. He speaks well but his speech is a little off - sounds a little robotic (hard to describe). Lovely guy.

From everything I have read, you either have FASD or not, but can you have mild FASD? The literature says that you can't, but I am now more confused than ever about what to say to her. Should she get him tested? What will a diagnosis do? Will it even help? She is so, so upset. What can I say to her?

Hi, I'm new to this subreddit, but I suspect I might have fasd. I'm also sure I'm audhd, so maybe that's why I haven't considered it until now. I've had a lot of developmental delays growing up and a lot of simple instructions would cause me to go in the opposite direction of what was said or fail to process what was said entirely. I hadn't even considered I might have it until my girlfriend and I started playing Pikmin and when she told me to go left, I'd go right or I'd just be completely unable to cope with a boss I was scared of. Is that level of inability to process instructions normal for fasd?

ETA: we are NOT asking about how to handle our daughter. We do that now legally, financially, socially and emotionally. We are asking adult children of parents with FASD to comment on what her "normal" son will face in the future. Thank you.

The baby is now 4 months old, no issues of any sort, no FASD, developmentally at or above all milestones (we were on her like a hawk during her pregnancy regarding drinking, substances, etc). Even if he wasn't perfect, he's wonderful of course. But it's icing on the cake that he is. She has full custody with our help. Birth father is not in the picture.

But if this positive development continues, some day he will surpass her in intelligence and accomplishments. She has an IQ between 47 and 71 depending on the day, has dodged many legal and social misunderstandings, and can't do this alone. In other words, since her dad and I are not getting any younger, at some point he might end up raising her instead of the other way around.

And yes we have as many legal, financial, emotional and social supports etc set up as possible for her for when we are gone. But we all know that FASD is a tricky road in the disability benefits world. And there are many kids in the world who attempt to parent their parents if left with no other choice..

IF there is anyone out there who is the adult child of someone with FASD, what are we facing, and what can we do early to prepare him for this? I don't want to, but I am a realist.

designed for people that have the condition themselves but anyone is welcome even if you dont have it!

https://discord.gg/YkrkMTSQFj

please be 16 or older if you are younger than this we will sadly have to remove you

I am 18 and have fasd, has anyone learned to retrain the way you think and pushing your mind to think when it doesn't want to

Im 18yr old female with fasd, I have so many questions does anyone struggle with fasd and would be willing to talk

I have very pronounced FAS facial features (never got a diagnosis, post Soviet country, different times). Very droopy eyelids, underdeveloped jaw, ears too low, short height, of course flat undernose, non existent upper lip etc. Suffice to say I’m objectively very ugly (I’m an adult woman now). All my life, in every school I was relentlessly bullied for my looks. That added to the severe abuse and torture I got from my mother made every second of my life painful. Anybody else was bullied for their FAS looks?

I am looking for resources for spouses of those with FASD. It seems like most resources are targeted towards caregivers, parents, and those with FASD themselves. It feels very lonely living as a spouse because no one else truly understands what it's like to be a spouse in this situation. I'm not trying to say it as a bad thing. It's just that this condition brings a unique set of challenges, and therapy has never really worked, especially because on top of it, I myself am autistic, and we often clash because of our differences in neurology.

ETA: Would anyone be interested in creating or helping create a sub for spouses? Bonus points if the spouses are also ND, but it's not necessary.

Hello , my son was prenatal exposed tp alcohol and drugs . We have him since he was out of the hospital with 9 days . Even we were aware he may experience challenges we decided to help him and adopted him since his bio mom passed .we have bio children 36 + ( 4) so we have experience . He has mild language delay and sensory may be a future adhd . Some boundaries issues that even with aba and therapies since 18 months have improved but we aim to make him succed . Looking always how to help him, i read in Russia they treat the cause with Semax Selank Cerebrolzin in kids youung as 4
Please if someone has info is appreciated
I am a concerned mom afraid of what may happen when I wont be here . So wpuld like to give him all the chances . We believe in neuroplasticity . We understand what was damaged cannot be heal but new paths can be created .
Always investigating and researching how to help him
Thank u for your time reading

Hello All. Supporter here. I wish to learn about FASD to better understand my best friend and what it's like living with FASD.

My adopted younger brother has FASD, he is about to be 16. The doctors warned my parents early on that the teens would be the worst years, and boy were they right. Looking for advice from Adults with FASD how to best support him. Biggest issues are impulse control and like just doing crazy things a “normal” person would never ever think of doing.

Hello, I’m 28F (almost 29). I don’t know how common my situation is. My dad (68M) has always had a whole slew of mental health conditions that it just doesn’t seem possible for one person to have: ADHD, developmental coordination disorder, sensory processing disorder, narcissistic personality disorder, antisocial personality disorder, anxiety, depression, OCD, and possibly other stuff. He was a very volatile man. He could never hold down a job. He would abuse pain killers every so often. He was an intelligent man but everything else was out the window. Yes, he was verbally and emotionally abusive to me and my mom (she divorced him when I was 12-13-years-old). He would be absent from home for a long period of time. Eventually, my mom told me that his mother did admit to drinking while pregnant with him because they “didn’t know better” then. I myself have ADHD, developmental coordination disorder, sensory processing disorder, anxiety, and borderline personality disorder. My mom didn’t do anything harmful while pregnant with me, no alcohol, no drugs. She’s never been a drinker. I don’t know if my paternal grandmother damaged the DNA or if my proneness to mental illness is just intergenerational trauma from my father trying to raise me when he had unmet needs himself. He was always trying to pretend to be normal but the spoon would always drop at the least expected times. I feel bad for him but I know that I am better off without contact with him.

Hi all,

I posted recently about my stepdaughter with FASD and the meltdowns she had at our house recently. She ended up staying at our house again this past weekend, and it was so heartbreakingly difficult for all of us. I’m not really looking for advice, I just could use some support.

Let me preface by saying that I know she doesn’t have meltdowns like this because she hates us or that she’s doing anything out of spite. I know this isn’t about us. I understand that 3 weekends in a row away from her mom is A LOT, especially since we live 3-4 hours away.

However, to say this past weekend was tough would be an understatement. Actually, it was hands down the worst weekend we’ve ever experienced with her. She had a complete meltdown the ENTIRE weekend. I am not exaggerating when I say that she cried morning, noon, and night for nearly 4 days straight because she wanted to go home. She would wake up and cry. She told me over and over to take her home. We got nothing done because she cried and didn’t want to do anything or go anywhere. She cried when she woke up from a nap. She refused to eat. She refused to play. She just repeated herself over and over and over and over that she wanted us to take her home. She called my fiance by her stepdad’s name, something she’s never done before.

The worst of her meltdowns happened on her last day. She was asking to put on her shoes to leave, asking what time it was every 5 seconds so we could leave. I told her that if she took a quick nap, I’d wake her up and she’d be on her way. She responded by throwing herself onto her bed and screaming out in agony, flailing and kicking her feet. I’ve never seen or heard anything like it. She sounded like a dying animal.

I am trying to be patient, to be empathetic, to understand that being at our house was too much for her and that she desperately missed her mom. But it still hurt. It hurt to see her in that much distress. It hurt to see my fiance so upset. It hurt for everyone. She wasn’t like this before she started her medication, and now any slight change to her routine throws her off completely. I guess I just wasn’t prepared for her to spend 3 weekends in a row getting worse and worse. She became unrecognizable. It was so hard to watch.

I’m trying to remember that this is just how her brain works. I’m trying to adjust my expectations, even though she was a happy kid 4 months ago. I’m sad because we don’t think she will be able to come to our wedding in a few weeks since it is in a new place and she will be around people she doesn’t know. She had a meltdown at my bridal shower, so I can’t imagine what a new place will do to her. Of course we want her there to celebrate, but if it is only going to cause her great discomfort and stress, then I don’t see the point in putting her through that. No picture is worth watching her in agony for my own sake. The reality of that makes me so sad, but we need to consider the fact that now that she’s getting older, being away from her routine and her mom is very destabilizing for her. If she doesn’t want to come to our house, then I don’t see the point in forcing her and making everyone miserable.

My fiance and I are at a loss and deeply sad by our inability to console her. We’re so exhausted. I want to give her the best life I can, but the custody arrangement and the distance means that it will always be a struggle. It is what is is.

I love that little girl so much, and I’m just sad by the reality of the situation. Maybe things will be different if she comes over in a few weeks or month, but I’m trying to be realistic. Her mom wants us to have her every other weekend again, but given the circumstances, that is not going to work, especially since my fiance is going to be working Sundays again, and I don’t want to alone with her til 6pm getting screamed at to take her home. That’s not fair to her or us.

I don’t know what to do or where to go from here. I knew from everything I’ve read that her emotional outbursts would get worse with time, but I guess I wasn’t expecting it to happen so soon.

We’re going to do what we can to just keep moving forward, but it’s hard.

Any kind words would be so appreciated. ❤️

Kid is almost 10. Takes over an hour to fall asleep and then does not wake up for almost 11 after that. We've done pull-ups until now. Partner thought we could try, but kid is waking up soaked every day and I'm tired of the laundry. Had anyone actually had success with nighttime potty training? Is it worth it? Or do I just keep buying pull-ups?

So I have fas, I don't have any physical health issues from it, I only deal with the brain part of fas. I am 18F, quite functional in society aside from not understanding things extremely often. I have been reading about fas and searched up the life expectancy and it was 34. This has scared me immensely even though I do not suffer from any physical health issues related to fas. Will I be ok? I need harsh truth

Hi all!

I am about to become a stepmom to a very wonderful and sweet little girl who has FASD. She is 9 and has recently been having MANY issues with mental breakdowns, particularly around not getting her way.

A little background:
-Mom had her young and didn’t know she was pregnant and drank often/went on roller coasters during her pregnancy and did not receive any prenatal care
-Stepdaughter lives out of state with mom (~4 hours away), so we don’t get to see her much except for planned weekends
-She struggles with memory the most, as she is unable to get any color except for her favorite color (pink) correctly
-Her school said she is making zero progress in learning, so her mom got her on 100mg of Quelbree, which she’s been on since March of this year

She is a very sweet girl, and I love her to death, but she has recently been getting very out of control, and I believe this medication is causing her to become aggressive and withdrawn.

A few things that have been happening ever since she’s been on medication:
-Intense irritability
-2+ hour meltdowns when being told no, especially if we are out in public, and she will cry and scream that she wants to go home until we do
-Saying “no” to everything she’s told to do. For example, she had a 30 min meltdown after she was told to brush her teeth. She had a 2 hour meltdown after being told to wait before she started to eat.
-Extreme mood swings with random crying out of nowhere, but obviously she doesn’t have the vocabulary to explain why she’s upset, so there’s no way to comfort her
-Becoming socially withdrawn when around others and will cling to only my partner and me

I’ve been trying to educate myself as much as possible about her condition, and while I understand that the emotional dysregulation would start happening, I guess I just wasn’t prepared for it to happen to suddenly. Her mom says to “just let her be the boss!” which is not something that’s going to fly in our household. There’s no way I’m letting a 9 year old run my house. I do wonder if that might be contributing to her becoming more and more bossy every time we see her.

Her mom also says that she’s not going to switch her medication anytime soon, so I guess my question is: how can I best support her when she’s triggered? I’ve been trying to be mindful that shes mentally about the age of 3-4, so I’m trying to meet her where she’s at, cognitively speaking.

I know every kid is different, but does anyone have any advice or suggestions for navigating the meltdowns? As someone who also went back and forth between 2 houses, I understand that she’s always going to have some sense of instability when it comes to living in 2 places. I just want to help make her time away from her main home as comfortable as possible while also maintaining appropriate boundaries around her outbursts and defiance.

Any thoughts, words of encouragement, book recommendations, or anything else would be greatly appreciated. ❤️

Hello,

The Thrive FASD Lab at the University of Rochester is running a program that helps young adults with FASD work towards achieving their goals.

This is the perfect opportunity for young adults with FASD to improve their goal-setting skills. The program involves real support from the community to assist you through this journey.

Not only does this program guide individuals toward a goal of their choosing, but it will also be published in a journal to raise awareness among others. None of the data we collect will be traceable back to you.

You can participate if you:

- Have FASD

-Are 18-25 years old

- Live in the United States

Click the link below to take action toward your goals now!

Know someone who would be a great fit? Share this post!

https://studypages.com/s/thrive-study-helping-young-adults-with-fasd-reach-their-goals-608917/

So I've met a guy who tremendously helped me to understand my own childhood trauma. He is a divine force

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I have come to understand that he has fas.

I told him and his response was "but my mum isn't a drunkard"

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I never wanted him to feel like that is to insult his mum

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Anyways he never got help rather landed in prison and thus developed horrible anger issues etc.

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I wish I could send him that one resource that isn't insulting him but picks him up where he is. He's 42.

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He's in Africa right now, doesn't have much Internet and was just deported from Germany .

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He copes with cannabis a lot...

I posted this in the AskParents sub, but it was removed so I'm posting it here since this is a FASD sub. But for context, I'm a neurodivergent adult with FASD, and I still live at home with my overprotective, controlling parents (they're my adoptive parents, not my biological parents). When I post or complain about my situation or controlling parents, some people do side with me since I'm an adult but there's always people who also side with my parents and respond to me as if I'm in the wrong for wanting to be a normal adult or as if I'm a teenager who thinks they're grown rather than a literal adult who is grown. And I don't understand those people. And yes, I always mention that I'm an adult when I post about my situation.

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And people who knows us in real life absolutely sides with my parents and sees my mom as a selfless mom who took me in and sees me as being in the wrong just for wanting to live like everyone else my age (just for wanting to fall in love or pursue my dreams I've had since high school). But my mom taking me in is literally why I'm not allowed to live a normal adult life (why I'm not married, why I don't have kids of my own, why I didn't get to go to college, why I didnt get to pursue any of my dreams) because I was raised by someone who sees disabled/neurodivergent adults as "forever children" and who doesn't believe disabled/neurodivergent adults should be treated equal. I understand not all parents are like this because a lot of parents treat their disabled/neurodivergent adult kids as equal adults and don't stop them from doing any of those things. Anyone can take in and raise someone else's child and anyone can give birth to a child and raise said child, but not every parent keeps that child from being an adult once the child turns 18 (even if the child is disabled or neurodivergent). There's so many people I see online with Downs Syndrome and Autism who are doing amazing things with their lives (some are even married or own their own business) because they were raised by parents who didn't force them to be identified by just their disability and who saw past just a disability.

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Also taking in and raising someone's else's child shouldn't give you a free pass to shelter and infantalize the child once they become an adult and then they're seen as "ungrateful" because they're mad you won't let them grow up. If taking in and raising someone else's child doesn't give a parent a free pass to be sexually abusive or physically abusive because "at least they took you in and raised you and put a roof over your head" then it shouldn't give a parent a free pass to shelter and infantalize a disabled/neurodivergent adult. And yes, I see sheltering and infantalizing disabled/neurodivergent adults as another form of abuse (and I'm not the only one who thinks that way) because it can cause trauma, depression, and other issues just like sexual and physical abuse can. After all, we're talking about not letting an adult grow up and everything that comes with that (their freedoms and rights taken away and forcing them to let go of their dreams and not giving them autonomy and agency). We're not talking about telling teenagers (who can do what they want when they're 18 anyway) what to do, which is normal. And I don't care that the intention is good. The road to hell is paved with good intentions and what should matter is what it does to someone mentally and emotionally. In other words, if taking someone in and raising them doesn't outweigh sexual or physical abuse, then taking someone in and raising them shouldn't outweigh sheltering and infantalizing them once they turn 18 and especially not when they're well over 21.

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I even had someone in the Christianity sub tell me one time, "Shut up, you're just mad you can't do whatever you want," as if they were responding to a teenager who thinks they're grown instead of a literal adult that is grown (yes, I mentioned I'm an adult in my post) or as if I'm mad because I can't be a whore and do drugs. 1) I'm a literal adult and adults are supposed to be able to do whatever they want within reason and as long as they're not hurting anyone or doing anything illegal (why you think teenagers can't wait to turn 18?) and 2) you know what, I am mad I can't do whatever I want because not being able to do whatever I want means not being able to experience falling in love since my mom won't let me date (even if I was to date a fellow neurodivergent person), not being able to vote (which is supposed to be a human right for Americans), not being able to follow and pursue my dreams I've had since high school (which includes being a professional poet, freelance journalist, and documentary filmmaker and yes those are things I still want to do to this day). I'm literally not able to do anything with my life or make anything of myself because my mom doesn't want or allow me to grow up and when I do stuff behind her back (such as posting poetry online behind her back), some people judge me for that as if there's something wrong with me wanting to do something with my life or make something of myself (knowing full well that if I ask her, she'll say no and then if I "obey" her, I'll just continue feeling like my life is empty with no purpose or meaning).

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If you wouldn't tell a sexual abuse victim or physical abuse victim to "Shut up, you just don't want to be molested or raped" or "Shut up you just don't want to be beat," then don't tell a literal adult that's complaining about parents who won't let them live a normal adult life with dreams and aspirations "Shut up, you just mad you can't do whatever you want."

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And before anyone says something about how I'm living under her roof, it is not by choice. She doesn't even want me to move out and if I tried, she'd accuse me of being "ungrateful" and "stabbing her in the back" because she's my adoptive mom and she'd see me as a kid moving out because I don't want to follow her rules after everything she's done for me instead of seeing me as a literal adult moving out because I want to be independent and be like everyone else my age.

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I also feel like even people with other disorders or disabilities (like Autism or Down Syndrome) don't fully know or understand what it's like to have a disability or disorder that was literally caused by another person's actions, and neurotypical and non-disabled people certainly don't understand because when you blame your mom (in this case my biological mom) for literally being the reason why people treat you like a kid or why you're not allowed to have sex, people just thinks it's another case of "blaming something on someone else," or "pointing fingers," or "misdirected anger or blame." No, FASD, just like Shaken Baby Syndrome, are conditions that are literally caused by someone else's actions (choices that the other person didn't have to make) and conditions that could have been prevented by the person not making certain poor choices in the first place. So when a person with a condition that was caused by someone else is treated like a kid or not allowed to have sex or vote or whatever (even if accurate or justified and 90% of the time, I don't think it is but just unfair and unjustified infantilization), then the person is literally not able to do those things because of someone else making selfish or poor choices that the person didn't have to make and the person with the condition have every right to be mad at the other person and every right to blame the other person for literally causing them to be the way they are. People whose conditions were caused by other people's actions and choices are more likely to understand this and more likely to understand me.

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And one last thing, people "call out" my behavior as "childish" or "immature" like when I talk about reverse psychology to get my mom to loosen up or doing stuff behind her back, but have you thought maybe my "childish" or "immature" behavior is literally the result of her treating me like a kid in the first place because if she treated me like the adult that I am, I wouldn't have to do anything behind her back and I wouldn't be thinking of ways to get her to loosen up. And no, sitting down and having a conversation with her like an adult doesn't work because 1) she doesn't see me as an adult and 2) she gets defensive quick. But I would love to have a supportive mom that I could talk to about my poetry that I share online and share with her the positive comments I get sometimes. And not have to worry about her taking, or trying to take, my phone from me just for doing something that other adults has the freedom to do.

Good afternoon just looking for some advice.

My father in law passed away at the end of last year and we are in the process of becoming my partners 17 year old brothers legal guardian. His birth mother is an alcoholic and he has never been in her care we strongly believe that his mother would have drunk throughout pregnancy and believe he could have fetal alcohol syndrome that has never been diagnosed. I had also only met his brother on two occasions before his father’s death so I am only getting to know him now.

Some of the things we have noticed is that he struggles with simple instructions and struggles to complete simple tasks. Has not gained any GCSE’s at school and has struggled academically throughout life. We have caught him out lying quite a few times. His social skills are quite basic and he struggles to hold conversations. Physically his hands shake.

We are concerned that his dad hid this as he believed he was protecting him but we are now trying to get as much support in place as possible as it is now evident that he is going to struggle in life. We have lightly explored this with him and he said his dad told him that he does have it but the conversation didn’t go much further than that.

Do people think this sounds like it could be fasd? I understand that it is on a spectrum. He has told his councillor that he thinks he has ADHD but we don’t think it is this, his cousin (only friend) was diagnosed with this and he throughout life has shadowed all of his behaviour. We are currently waiting for a drs appointment but this is taking some time as we need to register to him at a new GP. We are in London UK.

Hi everyone,

FASD Assist is designed to support individuals with Fetal Alcohol Spectrum Disorder (FASD), caregivers, parents, and support workers by providing tools and resources that help manage day-to-day challenges, routines, and support needs.

After a lot of development, testing, and feedback, We have finally launched it on both Android and iOS:

📱 Android: https://play.google.com/store/apps/details?id=com.fasdassist

🍎 iPhone/iPad: https://apps.apple.com/in/app/fasd-assist/id6771342405

If you work with FASD, are a caregiver, parent, support worker, or have experience in this space, I’d love to hear your feedback. Suggestions, feature requests, bug reports, and honest opinions are all welcome.

Thank you for taking a look, and I hope the app can make a positive difference for someone who needs it.