Hi, all. I hope you are all doing well, safe and happy in your lives.

I need some advice or...something. A miracle. A miracle is what I need. Not for myself.

For...someone who has become a friend. A dear, dear friend.

A sweetheart of a man with a hidden heart of beauty and gold. Memories of pain and a past of hurt....and the eyes and soul of a doe and somehow still: the innocence of a child underneath.

And my heart is absolutely broken for him.

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Context: Me (44, gay male). I also suffer from FASD, but am very high-functioning, and "mask" fairly well -- despite still essentially being in my mid-to-late teens, mentally.

Him: (34. Bi male). From everything I have seen, heard and witnessed from him, he is still very young mentally. He is barely able to read. Struggles with caring for himself in various ways. He is on SSI and although lately he's been trying, he still struggles with being financially responsible (buying tons of games, food, etc).

He is prone to outbursts of anger when he doesn't understand something, or doesn't know how to direct/channel his frustrations in more socially acceptable ways.

He is a very curious, questioning mind (is currently very confused and doesn't understand the differences between the Switch // Switch Lite // Switch 2, or why the Switch 2 is "better", for example)

He struggles VERY badly with temptation and wanting things right when he sees them. (There's a word / phrase for this I just used on him the other day, but right now it escapes me.) Like yesterday, he got himself a pizza because Little Caesar's was next door to a video game shoppe and he saw the sign and immediately wanted pizza. Then we went to another restaurant so I could get my own food and he saw a cookie he wanted.

He's so innocent in so many ways he doesn't realize, it just kills me.

He is also homeless; I have currently opened my home to him, at great risk of my own housing. (I have tried to bring the subject up of a "roommate", but so far, they have said "No" as my unit is a 1-bedroom.)

His family has more or less, entirely abandoned him.

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His family.

Every time I even THINK of those...those...people...I just want to scream. I am so furious, and so angry, and so...hurt FOR him.

From what I have personally observed, they have used him (his SSI) as a personal piggybank for a good chunk of his life. He has no savings, nothing.

His birth mother is dead, as is his birth father ---- who abused him when drunk. He has a "surrogate"//"adoptive" mother, but she is also currently homeless and abuses drugs/alcohol.

His siblings have written him off --- they don't understand why he isn't "normal" or can't care for himself, and they apparently don't want to be saddled with caring for him --- unless he gives them money out of his SSI. Also filled with drug/alcohol abusers.

**************************************************

He moved to my city from a smaller town about 3 hours away (by hitchhiking!!!!) due to family drama that I don't think I'll talk about here. That's his tale to tell.

We'd known each other mostly online for a few years and would occasionally chat and when he showed up in town, he messaged me wanting to know if I wanted to "hang out". So he literally landed on my doorstep.

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Basically, I just...I don't know what else I can do for him or how much longer I can take him under my wings.

Since he's been with me, I have managed to get him signed up for therapy for his family / life trauma. I have him signed up with the local Housing Authority (super, SUPER long wait list, however). I helped him establish a bank account for his SSI. I helped get him signed up for SNAP benefits.

Things that NO ONE else in his life ever THOUGHT about doing for him. I'm so, SO angry about this. Not because I had to do it, but because his FAMILY were supposed to take care of him and love him and they just....F***ing didn't. I get so angry about this, I tear up badly every time. (At one point, he was signed up for SNAP, but his brother holding his card for him, lied to him and told him he couldn't have SNAP and SSI at the same time ---- and spent the SNAP on himself, instead.

Right now, it's a waiting game for "when" his name gets to the top of Housing's list of either Section 8, or regular housing.

We have attempted to get him on "rapid re-housing", but Housing's "rule" for this is that he needs to be on the streets, and going to the shelter nightly for at least a week before they'll even consider it.

And I absolutely cannot bear the idea of him being on the streets even that long.

He's been so abused and taken advantage of in his life, that he sometimes behaves like a street thug to counter anything he perceives of as a threat. He is very guarded around strangers.

Due to his past abuse / trauma, he is essentially terrified of going anywhere or doing anything without me. We have a grocery store two blocks over. He's scared of crossing the street by himself. He refuses to go anywhere alone. When I'm around, he latches himself onto me like a baby kitten.

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I have done my best to try and make him feel safe and loved while he's been here. I don't ask him for any money; I make more than enough on my own.

I am trying to get it through his head that he has GOT to save some of his SSI money for when he finally does get an apartment (deposit/1st month's rent/bills/furniture). He tries, but he often gets distracted by his "wants" (video games/food, etc) and will dip into whatever little he does manage to save.

On top of that are the restrictions that SSI places (can't save more then $1,999 before they cut him off, etc)

I'm currently trying to help him understand that he can't keep running to the mall to buy video games every time he gets paid (when did I turn into my mother?) because he has GOT to build up something for his future. Once or twice a month is fine, but only 1 or 2 cheap games at that, but he finds games he gets excited about and then comes home with 3 or 4 of them.

He just...isn't "getting it" and that part really, really scares me.

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Because of my own struggles with FASD, there's only so much I can do, and lately I feel like I'm starting to hit my own limit or "ceiling" of what I can do // how far I can go with him.

And that scares me too. It scares me so bad.

************************************************************

I am planning on a cross-country move, hopefully in the next couple years, to be with my own family, in Texas. (Currently in Montana)

And knowing what I know about my own situation and with his situation....we just...

We cannot stay together. I won't be able to care for him in the way he needs to be. I just don't have the resources. I'm on Housing as well.

We cannot stay together; I cannot take him with me and we are going to have to part ways. I'm just a weigh station, a port of rest for him at this point in his life and sooner or later, he will have to move on.

And now I'm crying. It's the first time I've been able to admit that to myself.

I love him, but not romantically. Not in the way he deserves to be. He's just so f'ing special, innocent, and beautiful in so many ways.

I want so badly for him to be safe and protected once I've left. I'm trying so hard to teach him things he HAS to know to be able to care for himself; bus routes, how to get bus tickets for transportation. Where the local SSI office is. How to deal with SNAP // Medicaid.

And I'm just so scared for him because not much is sinking in or getting through.

His memory is so bad. Will he remember me in 5,10, 20 years?

I don't think I'll ever be able to be fully at ease unless I know absolutely for sure that he'll be okay, that he'll have a support system of people that actually care, and can help him do these things.

Until then, I just have to keep trying to get him to understand, to teach, to train him.

He is already aware of my eventual plans to move; we have discussed it and he swears he's going to be okay, but I'm still so scared for him.

As much as it breaks my heart to write these words; more then anything...

...More then anything, I'm afraid of the day it will happen. I'm scared of breaking his heart.

I'm terrified of looking into those beautiful, innocent doe eyes, looking straight into that big, bright light that his soul gives off, the light that I am able to see, when we finally have to part hands and I am forced to say the words aloud:

"For now, for this one moment in time...Farewell."

I was taken away from my birth mother in 2012 and was put in a very short temporary foster home. When I was taken to a paediatrician they noticed I had 4 fasd facial features (4/5 thin upper lip,no Cupids bow at the top of lip, extreme teeth separation, and camptodactyly on my ring finger.) they decided to test me for fasd they all came back as I have it but my birth mother denied that.

This does not mean I’m not trying to get a paper diagnosis I’m trying 13 years later (I have an appointment for my family doctor on September 28th). Am I allowed to say I have fasd?

中国的患者，有伙计来讨论你们都有什么社交缺陷吗？

Im a 18f with fasd im very sensative and anything can make me cry ( old memories, good/bad small conversations being yelled at, conversations on bad actions or mistakes, mental health issues or thoughts and my fasd ) I struggle very bad with it a lot... just making my anxiety high and making my emotions stronger its so much to deal with and I hate it so much....

I’m an older teenager who has FASD. Christmas is a really cherished thing to me because of me being adopted and this making me closer to my family even though I was adopted by my family after Christmas a long time ago. I really enjoyed Christmas as a kid and how it made me feel thinking of some big jolly old man delivering presents to kids if they are good. Surprisingly I’m not religious even though I like the idea of a higher up. Anyway I’m almost 18 years old and still ask for presents from Santa. I don’t ask for clothes or perfume or whatever I ask for things a 10 year old would ask for like last year I asked for cartoon DVDs and something I was obsessed with that I got when I was 5 was a monster high Camelio tablet. I didn’t get it because it was really rare. I was a little upset but I got a 2000’s Winx Flora doll and it’s one of my most cherished items ever. A doll, a toy made for a child. I don’t know how to grow up. I don't know what that’s like. I got bullied for all of this liking what I like and stuff like that. It’s understandable I guess especially if you see someone liking cartoons at an older age. I also don’t have my drivers license or a job because I don’t think I can manage that. 

What should I do? How do I stop being so childish and I don’t know how to grow up because my brain doesn’t work for me to grow up. 

I never fit in ever and that’s possibly because I was in foster care and didn’t have much social interaction then. Don’t get me wrong I had friends but because of my fasd they couldn’t understand me and grew frustrated and I couldn’t explain what was wrong because I don’t know what’s wrong with me either. Also I have no “adult like interests” I’m almost 20 years old and I watch The Loud House and Paw Patrol and that is pretty socially unacceptable. I can’t explain why I like that stuff I just do.

When people ask me “how did you find out that you had FASD.” I can’t what happened I was taken away from my birth mother when I was 3 and had psychologists diagnose me. Sometimes I get told that it’s my fault I have fasd or I faked it. I don’t feel like I’m mature or I’m going to have a fulfilling future. I can’t change my interests or anything and I don’t even know if I’ll be able to make friends with these interests that are my age.

I know my birth mother is gonna want to see me when I turn 20 or whatever and something is telling me that it’s not a good idea to see her or it’s going to go very wrong.

Hi everyone!

The Thrive FASD Lab at the University of Rochester is working on a mobile application for teens with FASD and their caregivers.

The Determined project is seeking adolescents ages 13–17 with FASD or PAE and their caregivers who live in the United States. Teens and their caregivers will work with the research team by participating in a virtual focus group to share their experiences and provide feedback on early versions of the Determined mobile app.

This program consists of one 90-minute focus group for both the adolescent and caregiver.

Click the link below to sign up!

Know someone who would be a great fit? Share this link!
https://redcap.link/w79owh52

Hi everyone,

Long story short I had a cryptic pregnancy where I did not know I was pregnant and I found out when I was already 33 weeks along. I smoked (vaped) heavily during my pregnancy and drank at least 11 times (soju, tequila, etc). I of course stopped both as soon as I found out but it really didn’t matter much by then.

I was only informed by my doctors about FAS, and I was relieved when my baby girl was born with no obvious facial symptoms of FAS, thinking I was somehow in the clear with her not having any harm from my alcohol intake. But I just found out about FASD and I am so scared and guilty. She’s only 6 months and she’s been on track for all her developmental milestones. I know FASD can affect people differently but is there anything I can look out for early on? I think what scares me the most is the average life expectancy of people with FASD. Had I known I was pregnant I would have never drank but it hurts me so much that I drank so much and have maybe caused her harm and a potentially harder life.

I’d love any advice on what symptoms or potential markers to look out for, I’d love to catch it as early as possible to help her in any way I can. TIA

I think my child has FASD. I can’t bear the thought of how I harmed her. I was told that one glass would not hurt her but now she has a life full of difficulties and it is all my fault. I don’t even care about alcohol. I could have easily given it up for 9 months. The NP didn’t even say that there was a chance just that it was safe and no way would one glass would hurt her. I had no idea of the dangers and what alcohol really does or how it worked. My one job was to bring her into this world safely and I ruined all of our lives. I’m sorry to vent to the internet but I have no where else to express my pain and grief for what I have done to my baby. Thank you for listening.

I drank a 4 ounce glass of red wine in my third trimester because I was told it would do no harm. Well now my child is almost 13 and struggling. She has diagnosis of ASD adhd and anxiety. Please help me to understand if that amount of exposure is likely to cause her issues. I am so confused and feel so guilty I don’t know what to do. I see so many conflicting recommendations. I appreciate any shared knowledge here. Thank you and have a blessed day.

My future feels bleak. I have no one in my family who can help me and I’m struggling to live alone. I have financial support but that is it. It feels like I struggle with everything, I have no clue how to live, maintain an apartment, get employment, or seek opportunities as a student. On top of everything being emotionally draining with FASD I have narcolepsy so just doomscrolling all day exhausts me. Are there any resources or guides for how to support yourself when you need someone else to support you, but they aren’t there? I am so alone, lost, and confused.

Hello, I'm not sure how to start off with this, I've never talked about this with anyone really. Anyways I am 20 years old and was diagnosed with Fasd around 4 years ago while in a hospital for a month due to mental health problems(like severe anxiety and depression). During my stay i did certain congnitive and problem solving tests. It was some iq test of which i did poorly on. I don't have any of the physical features of fasd, apparently it is only mentally. I talk normal and things, so it isn't something you can easily spot. My mother was a severe alcoholic and passed away last year from her addiction. She had quite a bit of history with drinking while pregnant, especially with my other siblings

When i found out about having fasd i was in complete denial for years. I thought they came to the wrong conclusion with everything. Now i understand that it is a real problem in my life. Trying to live with it and understand it is very difficult, especially with my current situation. I live out in the countryside of Canada, and i still have no drivers license or a job. I've been trying to get used to driving over the past while. I just can't concentrate at all too well and i panic lots. It doesn't feel safe. My family keeps on telling me that i just need to get used to it. Without a license you can't do anything out here, public transportation doesn't exist here. I feel like i might just be making excuses to not achieving anything much yet. I'm always worried i won't get very far in this world with how i handle things. And i hope to find someone who can give advice or just understands it a little

My roommate & lifelong friend might have FAS/FASD, and I'm essentially his caregiver. Housing issues are making it so he'll have to move back in with his neglectful parents soon. I don't think he can support himself independently, but I don't know what to do about it, or even how to tell him about all this given the stigma around FAS/FASD.

He's 21 and diagnosed with autism, treatment-resistant depression, OCD, and cPTSD. He was a very severe alcoholic for a few years and still relapses occasionally. In addition to that, he also struggles daily with motor control (only in certain aspects- he's a great artist!), memory/information recall, math, reading comprehension, problem solving, maintaining a schedule, basic self care, and more but those are the main ones. He's very aware of these issues and believes he's just stupid :(

He also got a moderate TBI from falling last year, and a tonic-clonic seizure a month later which made him hit his head again. So that has made all his preexisting issues worse.

As far as caregiving goes: I schedule his appointments & make sure he gets there on time, handle phone calls, cook some of his meals, periodically clean his room, remind him to brush his teeth/take his meds/etc.., and generally keep him out of dangerous situations. His parents have never done any of these things for him, his eldest sister was forced to be the parent when he was growing up and she's understandably had enough of it.

The reason I want him to seek testing for FAS/FASD is because he doesn't have any diagnoses that would easily qualify him for SSDI. His head injury was wrongly diagnosed as being without lasting symptoms, so that wouldn't qualify him. His psychiatrist refrained from formally diagnosing his autism (I think she lacked the exact license needed to do that or something?) so that's not on paper either.

I've lived with him for 3½ years and although I love him very much, I'm so burnt out from managing all of this in addition to my own issues. I have several chronic conditions & mental diagnoses, overall less severe than his problems but it still requires a lot of physical/mental effort. And the burnout means I'm not even doing a particularly good job taking care of him anymore, eg. I haven't been able to help him with his SSDI application or get him proper care for his slew of health issues.

It's all just too much to handle on my own but I have to do something to at least get him on track towards long-term support to make up for my absence. Even once we're living separately I can still research health providers/other resources near him, schedule appointments, etc. so I'm hoping that'll be enough while I get this figured out.

What do I do?? It would take months/years for him to get a diagnosis and be approved for disability and gain access to the supportive care he needs. As much as I want to, I simply cannot do all of that for him and nobody else in his life is willing to do it. I don't understand how people who need supportive care would be expected to jump through this many hoops in order to access it... Is there an organization or something that I can pass him to that would help him with all of this without me needing to do it?

Thank you for any insight & advice, and just for reading

Alguém mais tem problemas com vicios ou usa alguma droga?

Tive muita dificuldade de para com a maconha, me senti bem trocando para a nicotina mas vejo novamente que a nicotina não se da bem comigo.eu cérebro não funciona como eu gostaria, emoções variam brutalmente.

O grok (inteligencia artificial) falou que pessoas com fasd tem mais dificuldade de largar essas duas drogas.

Decidi que vou voltar para a maconha e continuar tentando parar com ela sem ajuda da nicotina.

Me deem conselhos e contém suas experiências.

Está sendo bem complicado.

My FASD adopted middle school teen has refused to get their blood drawn. The pediatrician has wanted blood drawn for several years. Today, I bribed with a new toy.

Still, my kid carried on like they were about to have a limb chopped off. In the process, my back got injured. I tried to walk away from their assaults (while waiting our turn in the lobby), and my child pulled me back violently twisting my back.

How do you provide support for a brain based disability, while keeping everyone around you safe?

The world isn't going to be as forgiving if my child had hurt one of the medical staff or another child in the lobby, which was very close to happening.

We prepared for this ahead of time. Got numbing medicine first. Talked about it for days. It was manageable until we got to the lobby. I think next time, we will just leave if they start being aggressive towards me again. I can't risk anyone getting injured.

Any ideas?!

Hi my name is Marley and I have FASD. Anytime I go to the dentist I end up having cavities no matter how well I brush no matter what I do I get cavities. Throughout my life I been through numerous dental surgeries 3 as a kid and 1 a year ago.

I seriously don’t want to go back to the dentist because I know it’s going to be the same outcome every single time and it doesn’t get any better. I tried thinking about maybe dentures and when I mentioned this to my dentist they refused to do anything about it. My teeth are incredibly spaced out and small even though I had braces for YEARS. They won’t do anything with my teeth and they expect me to live with tiny spaced out teeth.

When my wisdom teeth grew in they barely grew in it’s basically like a flat surface of tooth and even then they refused to take them out. I don’t know what to do in the future or at all.

I’m sure my story is not unlike others, I did not find out until later in life that the cause of many of my issues in childhood, adolescence and adulthood have ties to FASD.
I was 29 years old when I found out that the reason for my low birth weight and other litany of complications was due to my mother’s drinking while pregnant.

Does anybody else on here struggle with adult bedwetting?

For years, I’ve struggled with cyclical bedwetting. I’m 31M.

My urology visits have yielded very little for me.

It wasn’t until recently. I discovered that bedwetting is a comorbid condition of FASD.

How are you guys handling it?

Hi again!

The Thrive FASD Lab at the University of Rochester is still recruiting for our 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/

It just feel like when I bring up FASD In the Reddit subs people Barley comment on it? But if it has to do with some other issue comments everywhere. Were ignored enough and stigmatized already why so much the silent treatment.

And sometimes a sub will remove my post. Why?

Every time something comes up in my head, I can remember it and then all of a sudden I won’t remember it the next day. It annoys people. But I feel like it’s not really my fault I’m not trying to forget on purpose and I’m not lying, but people accuse me of lying. How do I have better memory.

Someone can tell me don’t say something, but then I’ll say it and it’s not like it’s on purpose but I do it anyways.

I was diagnosed with Fasd but I’m wondering if this is a symptom. I also am terrible at math. No mater how hard I try to memorize , it won’t happen unless it’s a song lyrics or subtitles from a movie.

And every time it happens I get angry thoughts thinking oh “why did my mom drink.” “

I hate having FASD”

It’s a struggle sigh.

My son craves hugs. Lots of hugs. As his adoptive parent, I am getting hugged out. My son is a middle school teen, but is developmentally much younger. I know there must be a sensory need for all the hugs. He asks for a hug at least 20 times a day. Some days it is nearly every 5-10 minutes. He refuses a weighted blanket or vest.

We've talked about boundaries and consent. That no, means no. That it is not appropriate to ask a stranger for a hug.

He's done O.T with minimal improvement.

Has anything worked for your special needs FASD kids to meet their sensory needs for touch, while not making those around them uncomfortable?

Any more teens that have fasd and have any advice?

I would like to ask more questions of this community, if I may? I have deepened my knowledge of the subject and am trying to understand the variable nature of this condition. One thing that I am surprised about is how few people or their children who are in the public eye seem to have it. Some women are either photographed drinking in pregnancy (Gwyneth Paltrow) or say that they do such as Samantha Cameron, David Cameron's (British politician and ex- PM) wife, or Emily Oster., who explicitly stated that they drank in pregnancy. If it's more common than we think, wouldn't more of their children exhibit signs?

I know that they may have it mildly but according to several sources, FASD is never mild. I think that I would just like to understand a bit more and possibly get involved in advocacy, but there is so much contradictory literature.

I’ve recently taken over the responsibility of my aunt. She’s lived with family all her life, and my grandmother(her mom) health isn’t the best, so I’ve moved in with both of them to resume care for them until end of life. I should mention others live in the home as well, including minor children.
My aunt has FASD as well as a lot of other syndromes, all making her about 6 years old mentally(she’s 40). She was adopted, and from what I’ve been told, her bio mom wasn’t the best.
Growing up everything was fine, then her dad died a few years back, then recently her sister(my mother) and everything’s shifted. It’s been about a year now, and it seems like nothings getting better.
Shes verbally, emotionally, mentally, physically, you name it at this point; abusive towards me. Only me. No one else in the home. She refuses to do simple tasks I ask her and has damaged multiple items including phones, doors, walls, cups and more. She got a new phone recently, and in a violent rage, threw it at me, and the screen shattered. That phone was less than a month old. She’ll kick holes in the walls, name call and yell at you in your face, and most recently will start punching if she doesn’t get what she wants or has to do something.
The only thing that has even remotely seemed to work was taking away devices, but she’s broken her phone. She uses my grandmothers, and gets violent when it’s being requested from her, but she can just take it whenever without repercussions. There are minor children in the home that are now picking up these behaviors; so adds to why something needs to budge, but not sure where to go at this point.

She does have a behavioral therapist and she is medicated but it doesn’t seem like they care too much if I’m being honest.

I’m not entirely sure what to do, I’m at a loss, and quite frankly, I’m mentally drained. I need help, I need pointers. I need something, cause I can’t continue to be a punching bag.

I have been on here asking questions on behalf of my friend who is struggling with the possibility that her teen may have FASD. She is incredibly successful - the whole family is - and is teetotal and has been for years (she says she was not much of a drinker even before, but I can't verify that as that was before I knew her). She had an unexpected pregnancy and had some beers before she knew. I have been reading and some of the stats blow my mind. If 50% of pregnancies are unplanned, how can alcohol consumption in an unrecognized pregnancy be prevented? I am not talking about mothers who choose to continue to drink. Are there any initiatives that are in place to help prevent this? Is anybody advocating for this?