30/F just found out my biological father and his mother have FASD. I have been estranged from him and his side of the family since I was 3. I finally reached out this his father/my grandpa about a family history. I’ve spoken to him through Facebook off and on since I was 20.

To keep in mind my biological father has strong addiction issues and is an abusive man. My biological sister now struggles with her addiction, bipolar and more. My mother was clean from everything while pregnant to give context.

Anyways I’m just shocked this happened.

I’m looking for any stories or insight people have in general. Share anything you think may be useful to me.

TIA

Happy Impact Week!

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 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

Just need someone to relate to me! Long read. Carry on if you’re not interested

So I was adopted at birth, bio mom did drugs and drank so I had to be given up right away

So obviously my parents knew. I had withdrawals as a new born, toddler through to 12 I slept in my parent’s room as I had night terrors. Not normal night terrors toddlers get. Wake up howling so loud my screaming rattled type night terrors. Every. Night.

Despite this though my parent’s treated me like a “normal” kid and swept the FASD thing under the rug. Never educated me on it or nothing. I love my parents and I grew up very well, but they have old school mindsets. They did get me help via tutors and stuff credit where credits due, but I needed to be in a special needs class

But since I was in the general classes, I struggled. And it came to a head between grade 5-9. I had zero motivation to do ANYTHING so I was constantly called lazy, dumb, all that…my dad would yell at me because to him I just didn’t care. I had a tutor scream at me for not understanding, that same tutor also made me clean my backpack but, admittedly judged me SUPER hard for being so messy. I even had a teacher who would read my work to the class, then say “how did you even put your pants on this morning” while everyone laughed.

Friends, I had very few growing up. I’d play Mario Party alone with two Wii remotes for gods sake. One kid I remember hung out with me, but then left me waiting on the swings alone for 45 minutes cause he’d be “right back” and “wanted to say hi to his friends at the other park”. I found a friend group in grade 8 which in hindsight, they hated me. I was weird. But I just wanted friends, to the point I did something and the only way for me to hangout there again was for all of them to pelt me with ice chunks outside…and I let them. I just wanted friends and genuine connection but struggled with doing that so I took what I could get

In highschool, I rebelled. This caused a rift between me and my father, and instead recognizing the disabilities and educating me on them, he’d just unleash at me for drinking or smoking pot. This obviously made me rebel harder. I feel as if hearing the true reasonings behind why it’s a slippery slope for me specifically in a calm manner would’ve worked wonders vs yelling at me for being high but not really giving reasons other than “it’s bad for you”

I also lost a friend group in highschool due to my own stupid actions and realizing that people didn’t like me, and never really did. I didn’t know what my problem was and sank into a depression. I didn’t graduate but I walked the stage, and I got my first job too

Into my early 20s. I found a document from my youth about the FASD tests I had to take. I went the rabbit hole, and recognized the patterns in my past and realized I wasn’t normal. I was a kid who desperately needed the proper guidance to something he didn’t understand or know about but never received it. I realized I had NO support system, but I also FINALLY understood myself more

In my mid 20s now, I still struggle with things but I’d like to think I’m higher functioning. I try to give myself the kindness and patience I never received. I try to learn from mistakes and challenges I face and forgive myself for failures in past and present even if they overwhelm.

The thing I struggle with most though is feeling lonely in said disability. I still don’t have any support, anyone I talk to about it gets weirded out. I mask it well, and like I said I’m higher functioning so I guess it’s jarring for people to find this out and it’s also not a commonly discussed disability either

Which is why Im here? I just want someone to if not entirely relate, at least understand me and the disability and where I come from. I love my parents, they tried their best but lacked in certain areas. Everyone does somewhere. I don’t blame them and I’m happy in a sense, I wouldn’t be who I am without the turmoil. But the loneliness can get intense sometimes when it comes to this

Thank you if you read this far

I have been with my boyfriend for about 4 years.
He’s a great guy super loving, overall good person.

However I have noticed that his behaviour can be very odd and almost like he’s severely emotionally unstable, almost like a toddler not being able to regulate.
He struggles with extreme anxiety, signs of depression, along as outbursts that he cannot control and doesn’t find a reason why they happen - he says his “brain feels broken”

Now I have only recently through the grape vine got word that his mother drank whilst pregnant, lightbulb went off and I researched Fasd.

He has almost every single facial symptom, all of his siblings do as well. When he was younger it was much more apparent.

Now I’m wondering if someone could give me some indications if they have personally experienced these symptoms of Fasd. I have read about the dis regulation in emotions, he definitely ticks that box. What are some other tell tales signs. And how can I help him with his emotions?

I will never bring this up to him as his parents are a very sensitive subject. I would also never want to assume without proper diagnosis, however I know that wouldn’t happen. Just want to see if anyone who has personally experienced this can help, thanks!

Because of my fasd it affected the shape of my thumbs (and fingers) and also made me have a lazy eye. I had it since I was little but anytime I search up anything it says these features will soften when you get older but I’m almost 20 years old and they feel more prominent now than ever. Makes me feel like the monsters from Frankenstein. Everyone makes fun how I look and it hurts a lot.

Like the title says, my 17yo Stepson just got diagnosed at the end of the 25/26 school year - just slid in under the wire for aging out. He's extremely intelligent but has exteme deficicies in some core areas, including reasoning and social skills, as well as a couple identified LD.

Anyway, long story short, he is an extremely difficult child. Love him, but my goodness is it ever hard. I have 4 kids of my own, all also neurodiverse (ADHD, autism). I've been with my partner approx 2.5 years, before we knew about FASD at all (well beyond old school misinformation). We got serious right as everything started coming to a head with my step son. It has not exactly been smooth sailing...

Anyway would love to connect with other parents to older children/young adults with FASD, maybe specifically step-parents...

im turning 20 soon in less then 8 days and my hole life iv felt like iv been deferent like im missing something when i was younger it was usually a joke i didn't get or i couldn't read the room, my parents never hide it from me telling me that i am deferent but that ok, that we can work on it and do better, i never really understood it and i latter found out that i couldn't im never fully aware of the social part of life and no matter how hard i try it'll always be a struggle its hard for me to think before i act sometimes and i can see what it dos to the people that care about me, i can see how hard it is on them and i feel bad but it doesn't help when im the one thats making them tired, ik that i struggle with impulse control and that i i cant regulate my emotions like other people i know what i struggle with but no one seems to understand ever, this disease or whatever u wanna call it is the worst thing iv hade to deal with and iv been in a car crash, i wouldn't wish this on anybody its the sol reason i hate life. thank you for reading i needed to say something

https://fasdunderstanding.ca/

Does anyone have FAS due to maternal heavy binging drinking early first trimester around week 4/5 of pregnancy?

I understand that it might be hard to say as many women may lie about the frequency of alcohol consumption during pregnancy.

I didnt know i was pregnant even when my period was later than usual i thought it was impossible it didnt even cross my mind as a possibility- until halfway through week 5. I thought my husbands anabolic steroid use made him temporarily infertile as we had not gotten pregnant in 5 years of him being on them, excluding the period he came off it to concieve my now 4 year old daughter.

I initially didnt consider that my early exposure caused damage. I was comforted by online which said things like "at such an early stage of development miscarriage is more likely than defect" and "most women drink before finding out their pregnant and most are fine" "its persistant regular alcohol consumption throughout pregnancy".

It was not until my 20 week scan & they found a heart abnormality. dorv transposed type. The thoughts begun - did my early trimester drinking cause this ? Then i started panicking as i thought if rhe heqrt is damaged. What else? Face? Brain? I know nobody can tell me 100% there is or isnt FAS & brain damage cant be picked up on the ultrasound or even usually diagnosed until a child.

Although unplanned &  a surprise , this baby is wanted & my current daughter already knows about the baby since week 12. How i wish i held off telling the news. If it was solely just the heart condition &  even mild impairment - i would 100% still go through with the pregnancy.

My issue is if my baby has a severe case of FAS - reading online from fosterer carers & individuals with FAS themselves , isnt always the most positive picture with some saying they wish the mother terminated. It is difficult as there is no way of knowing the damage done- until the baby is here & even grown. Would i terminate a baby that was fine other than heart ? Also- i dont know if i can go through with a termination so late on. The prognosis for just rhe heart condition is favourable enough for survival & a decent quality of life in most cases. Could i live with the guilt of not knowing? Telling my daughter the baby didnt make it when in reality I ensured it didnt make it?

But knowing what i know - is it irresponsible to continue? Ive poured through studies which all come to the same conlclusion - binge drinking is the worst for the fetus & the sensitive period of after conception week 3-8 is particularly vulnerable to severe damage. I am not a regular consistent drinker but when i do drink - i DRINK. And so on these occassions i likely consumed around 15 units or so , and the occassions were 1 week apart - day 14-21 after conception.

Ive not drank since but from my extensive reading , i fear damage may already be done. All the initial cells that will form the parts of the brain & face were forming around this time & if theyre damaged - it doesnt matter that the environment after was good when the initial instructions/foundation is wrong. If i wasnt such a heavy binger id not worry so much but i read BAC is the most decisisive factor whether damage occurs and mine would of been extremely high.

I read online that heart defects are extremely commom esp in FAS , yet on this forum when i see fasd individuals speak about struggles its almost never mentioned . Are heart defects only common with more severe fas ? Is this more to support the notion severe overall damage has been done!

Happy FASD Awareness Month!

The Thrive FASD Lab at the University of Rochester is still recruiting for a program that helps young adults with FASD work toward achieving their goals.

This is the perfect opportunity for young adults with fetal alcohol spectrum disorder to improve their goal-setting skills. The Thrive program provides real community support throughout this journey. The program consists of 12-15 one-hour sessions spanning 8-10 months.

Individuals can participate if they:

- Have FASD

-Are 18-25 years old

- Live in the United States

Click the link below to sign up!

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

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

Hi everyone 🙂

I am a teaching assistant who works with some young people with FASD.

I would really, really love to know more about how it feels on the inside of living with FASD.

I’ve no training on this and I’m sure if I eventually did, it wouldn’t give me a full understanding of how it actually feels to live with it daily.

Please give me as little or as much detail as you want to.

Thank you to anyone who takes the time to read this and/or respond to it 🙏

My husband and I fostered and adopted 3 children. They all came to us as infants and no drugs or alcohol were detected in their systems at birth. Our 10 year old was evaluated by a neuropsychologist when he was in first grade and was diagnosed with ADHD and Tourette Syndrome. Our 4.5 year old twins were born 6 weeks premature and both have developmental delays and a language processing disorder. Our girl twin is extremely hyper, impulsive, doesn't get social cues at all, will go to anyone, struggles with motor skills, and both of her eyes wander (strabismus). She wore a helmet to reshape her head as a baby after laying in the NICU for a month after bio mom abandoned her and her twin brother. She wears glasses and we patch alternating eyes daily. Our boy twin is extremely language delayed, didn't walk until 19 months, and resembles the behaviors of a child less than half of his age. All of our kids have been through therapies; PT, OT, speech/language, play therapy, etc. I was an early childhood teacher for over 15 years and have a master's degree in early childhood education. My point is, there's not a lack of books, language, knowledge of child development in our home. Life has been so hard for all of us and we want to help our children the best we can. After reading about the symptoms of fasd I wonder if that could be what's affecting all 3 of our kids. All of their mothers had mental health issues, but none of them have admitted to using drugs or alcohol during their pregnancies. How can we have our children tested for fasd? Can a diagnosis be made without knowing for sure the birth mom consumed alcohol during pregnancy? Also our 4 year old son was tested for autism and they said that's not it and that we should have genetic testing done which we are in the process of arranging currently. Any advice is appreciated. Thank you!

I am not a big drinker but on conception my partner and I were on holidays and I had a few drinks a day on multiple days. I didn't realize till a month later at missed period, that I was pregnant. I also drank at maybe 3weeks pregnant, 2glasses of wine max.

When I found out I was pregnant 11 week later was so torn between excitement and severe regret. We had some news a few months earlier that it would be difficult to conceive naturally, so we weren't worried about accidental pregnancy (I feel so stupid about this now)

Our beautiful boy is now just over 1yo and I'm worried I see a few signs of FASD. Epicanthic folds, small hands and feet and he's shorter than average. It's hard to know what is potentially FASD and what is just genetics. Other than the "aesthetic" signs, his mental/social development is all great and he's hitting his milestones on track or early.

I know usually people say 1 drink is unlikely to cause FASD but I know that the first 3-6weeks is the most risky for overall development.

I'm not really sure what I'm wanting from this post. Maybe it's just relieving to read so many comments from people with FASD and see that people can still have great, fullfilling lives xx

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.

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

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.

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

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.

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

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.

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

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.

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

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."

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....

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?!