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Hello all, I have never posted something on Reddit so I'm a little new to this. I'm currently in college (online) and have two highly disabled siblings who are five years younger on the Autism spectrum. Both are semi-potty trained with one being completely non-verbal with temper issues and the other being echoic with epilepsy. My family has 3-4 ABA therapists who perform in-home therapy 8 hours a day, 5 days a week. I live a very stressful life and due to having no other siblings and one 1st cousin that I have not talked to in years, I feel pretty alone with this situation. I have tried reaching out to some of my friends about this but they are pretty clueless on what to say. I'm a little scared about starting to date since the prospect of not having 1 but 2 disabled siblings can really turn a guy away. I'm pretty amazed that I have not ended up completely losing it by now lol but are there any resources for support and any advice to give to someone trying to navigate their life?

This is totally off-topic but would anyone happen to know if there are any disabled sibling scholarships in the United States? If not, that is absurd.

In less than a week- my parents are taking a much dreaded trip with my older adult sister, who is non-verbal, with limited mobility and has severe developmental disabilities. Despite her challenges, she is a kind, social, and happy individual.

I am not a fan of air travel myself and i cant help but think of the how tiring, confusing and uncomfortable it may be for her.

This is the first time ever they have to take a long haul flight (13+ hours non stop) with her. While my parents are the best caregivers for her, I'm concerned about how others might react to her behavior. She can get frustrated and cry, similar to how toddlers express themselves, and worry about someone mistake her for being violent. Or worry about any potential bathroom issues.

I made some accessibility arrangements for her (wheelchair to the plane etc). But l'm hate myself for not being able to make this trip with them to help and support.

Tl;dr - guess am nervous about their well-being and safety. Any suggestions or advice to help make their trip easy is very much appreciated.

Edit - typos

Also please feel free to share similar experiences if any. Thanks again

I'm 23F. My sister is 16 and very autistic. Non verbal. Has occasional epilepsy seizures. Still wears diapers. Can walk but is not independant at all.

I would mean the world to me to get your opinion on this. I've been taking care of her for a really long time, since I was around 10. I was never taught my own routine or anything unfortunately. She was my routine most of the time. Always have to keep an eye on her. Everything's locked at home. Doors, fridges, pantry. Bathroom. Everything.

She throws random tantrums that can happen anytime. She repeats the same noises a lot and keeps yelling what she wants until she gets it. When given food that she asked for she would sometimes spill it. Same goes for water or her medication. I could talk for days, but what I came here to say is that my mom refuses to take her back to our home country where she can be taken care of.

We're in Canada and she's too scared to place her in a daycare for disabled children. She thinks she might get abused there and I get that. When I suggested for her to go back home (the lady that took care of my sister when she was a baby wants to work for my mom again and live with her just like before), she said she doesn't want to be the one to sacrifice her life here.. she said she doesn't want to separate us from our sister.. I don't understand her point of view. It's like she can't see how miserable we are.

What do you guys recommend I do? She doesn't to cooperate and I've been having this issue for a really long time. I never had a real identity and I always dread coming back home after work or school. They yell at each other all the time and she always insults her and tells her how she ruined her life.. but she won't do anything about it. Please advise me.

This is my first post so I apologize if it's too wordy or if the formatting is wrong in any way.

I (19F) have an older sibling with autism (21 NB). They were diagnosed late, at around 18 or 19 I believe. It's been a big adjustment to say the least. My parents are extremely kind and understanding about it, and my younger sister (17F) and I try our best to accommodate what's needed of us. However, it is becoming increasingly hard for my younger sister and I to stay patient with our older sibling.

There was a really big incident a few months ago that occurred where I found a spam account of my sibling's on Instagram where they were bad-mouthing me, telling my trauma in a way that basically blamed me, and overall just said a lot of nasty and cruel things about me. The thing is, they'd always acted like I could talk to them about everything that happened to me. I love my sibling, but to see what they said was a punch in the gut. They called me a "lost cause" referring to my battle with depression, said I was a drug addict (I have never done drugs so I am unsure where this comes from), and overall just made me sound like the worst person imaginable. There were other posts about my parents and my sister as well. Some posts said some really concerning things, one saying they'd like to tell someone in their life they're glad that person's dad died, wanting to hit other people, and more violent things. I've tried my absolute hardest to be a good sister, and when I was going through things I owned up to the ways I wronged people and to fix the relationships I strained. My sister ended up telling my parents about the account because I had told her, just wanting to vent about it. My parents ended up sitting us all down to talk about it and figure the situation out. The thing is, what my sibling posted and said was brushed off completely because they have autism. While my parents were mad for me that parts of my life even I don't like to talk about were put out there, that anger didn't last very long. My parents told me I shouldn't be so upset with my sibling because they don't have the same social knowledge as I do. Here's my issue with that though, I know they don't. HOWEVER, they also made a post saying they were removing me as a follower of that account so I wouldn't be able to see the previous or any future posts about me. This makes me think it's not that they didn't know what they were doing was wrong. (I should clarify, these posts were made about a year prior, when I was in a very dark place in my life. I had only seen the posts because while I used to be a follower of the account, I was let back in as a follower because my sibling forgot about the posts.) They played victim with a lot of the situation, just getting really mad at me and saying it was a way to express themselves and how I don't understand that what I went through "affected them more". A part of me feels like they see themself as the victim in everything because that's how my parents have treated them since the diagnosis. The comments on all of the posts were mean as well, and making them out to be a saint. I completely understand that my actions in the past affected my family, seeing as I get reminded of it every time I try to open up about my depression. I just feel that my parents are letting them get away with saying horrible things seeing as how there was no real consequence for this incident.

My sister and I have basically been told we aren't allowed to be frustrated with our sibling or even mad because of their autism. When I decided not to speak to my sibling after the whole Instagram incident, my mom would tell me every day that I should talk to them and make things right because they didn't know any better. However, I know that if it was the other way around, I would have faced much bigger consequences rather than give a half-hearted apology and being told "just don't post that stuff anymore." I don't know how to deal with it anymore. My sibling and I are back on speaking terms, and we have been for a bit, but I can't get rid of the hurt from it all. My parents tell me to let it go because of their autism and stuff like that, but I can't. I've never been so betrayed and had someone be so cruel to me before. And this is not the first time they've had issues with social media and saying things that are wrong to people online. They also lash out and call us (my sister and I) jackass, bitch, and more if we aren't happy with something they did.

I just need to know, am I selfish or a bad person for still being hurt and upset about what happened? I really just need some advice on what to do.

I, 47 female, have a severely mentally disabled brother, 55 who lives in supported living. We pick him up every weekend and we go wherever he wants- eat out, restaurants, grocery shop. We grant him everything he wants and at the very end when we visit my mom at her house and he has a meltdown. Screaming fuck you I will kill you I will slap you just very psychotic. Continuing to screaming with my moms neighbors staring. There were no preemptive behavior or triggers. So my question is do I bother trying to understand ? I can’t help but blame myself every time this happens that I could have prevented all this but at the end of the day he is a brat. I tell my family about what happens and all they could say is relief he didn’t attack me in the car, which is what has been happening to his care providers.

I cannot stand my disabled sister anymore. Every day it's a tantrum. She antagonizes my mother and treats her like shit. She insults people and screams, has threatened physical violence and this all happens when she can't do as she pleases. She is a deeply deeply unpleasant person to be around, she wants things her way or it's insults screaming and "crying". In quotations bc once she realizes the crying won't help her get her way it suddenly stops. I don't know why she's like this, none of us were raised to be spoiled and she didn't use to be like this. I resent her so badly because my mother suffers a lot due to her behavior, we can't work or study at home because she carries a reign of terror here. The worst part is knowing there is no scape, if I move out I'll be back in this hell she's created once my mother dies. I've run out of empathy, patience, or any other positive emotion towards her. I realize how awful this all sounds. But sometimes i wish one of us could die so I didn't have to go through this shit anymore. I don't know if anyone else feels helpless knowing they've been brought into a situation no one would ever wish on their worst enemy, and that it will be this way until the day they die. At least my parents asked to have children, I didn't ask to be born into this. And I love my mother so much, she doesn't deserve this, she doesn't deserve this treatment or stress.

To be honest I don't truly know how to explain my feelings with my Younger sibling and I can't tell if I'm here to rant gather support or both.

I won't lie and tell you that I don't have one negative feeling toward my younger sibling but I can't tell you that I don't have any love for them. The way they smile when you give them a high five or the protective feeling I get when I feel like something is wrong. But there is also that feeling of weight on my shoulder that I've had since pre-school that won't go away. My parents both live like they are single to get the other one mad and they don't realize in the process I end up picking up all the pieces. I shower him, read him stories at time for more than 1 hour for my sibling to fall asleep, watch sibling BM so he doesn't make a mess all while trying to maintain a high GPA.

It seems that my life is no longer mine but it's my siblings and my parents. I take on everything they refuse to do because their is no other way. I can't join clubs or National Honor Society even though I've worked so hard to do these things because if I do: Who will pick my sibling up from the bus stop? Who will make sure he's eaten dinner? Who will make sure he hasn't made a poop mess all over the floor? But on the other hand my parents are so mad at each other and trying to get the other to do all the work leave it all to me. They don't understand me when I say I'm tired or how I feel suffocated. They don't understand how I've given them my whole life and I just ask for a piece of it back and they refuse.

Maybe I'm here because I need someone to tell me that I'm not alone and that I'm doing great. But I need to know that my effort won't be for nothing. That this feeling of suffocation I have won't be forever. I don't act out I maintain a solid GPA above 3.8 I have two clubs as those are the only ones I can attend. But I want to know your stories. Again knowing I'm not alone even though it feels like it is something I need.

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I (22 [almost 23]F) have a severely mentally disabled older sibling (24M). He has done a LOT of crazy stuff throughout my life from tantrums severe enough that I have had to call the police to what professionals call "sexually aggressive behavior."

Recently he has begun engaging in sexually aggressive behavior again, so his medication was adjusted. It seemed like he was getting better, but a couple of weeks ago, he went after me. It was absolutely horrible, but honestly, what was worse was being left alone afterwards.

My mom had to take my brother to the hospital where she basically waited all day for him to get checked in and my dad was working. And I get it, I do. They have to do what they have to do. But on some level I also feel like I'm the victim; I'm the one who got attacked, AND IT'S STILL ALL ABOUT HIM. The next day: my mom has to go back to the hospital. My dad has to go to work. I'm left alone again for the second time in a row. I am pretty much alternating between numbness and anger and sadness all day, and I'm dealing with all of this alone. I don't have many friends, and even if I did, I don't talk about this sort of thing with them. When I was younger it was largely a fear of judgement that prevented me from doing so, and now that I'm older, it's just not the sort of thing I like to talk about outside of family.

Finally after two days, I manage to get myself together. I'm still upset, but I can function on a day to day basis. Unfortunately, now my mom's home and evidently, after keeping herself busy for two days, it's only just hitting her. So she's working through her own depression (which, to be clear: I don't blame her for at all. She is 100% allowed to have feelings), which is turn feeding back into MINE. And while she's upset about me being attacked and not being safe, she is also (understandably) upset about my brother being back in the hospital and potentially not being able to be safe around others, and the latter is what she spends more time on because she has to go to meetings and such about him. Which just leaves me feeling like (again) it's always about my brother even when I'm the one who actually needs support. Not to mention, I hear my brother talking to my parents on the phone and he sounds so sad (and completely doped up), and I'm starting to feel badly for him and I. Don't. Want. To. He hurt me, why should I have to feel bad for him on top of it? And maybe that makes me a terrible person, but I also can't help that that's how I feel.

Now, my mom is a wonderful person, and she actually acknowledged a lot of this. I am really lucky to have her, and she actually suggested going to my grandparents to get away from everything (which I did end up doing). But now I'm back, and how was my first night spent? With my parents arguing about my brother. My father is completely insensitive to the fact that I have absolutely no desire to see my brother anytime soon (the former basically had my brother apologize to me directly over a phone call, and I really did not want to talk to him; my brother is out of the hospital, but he lives in a group home right now) and is only kept in line by my mom. I try to spend one HOUR with my mom this past weekend and fail, meanwhile my brother gets a WHOLE DAY with both of my parents without any struggle at all.

It feels like now that I've acknowledged that on some level, I'm resentful of my brother and angry at my parents, I can't turn it back off. And honestly, it's been so long since I let myself feel that way (since around middle school actually, and then I somehow got it into my head that it was completely childish to feel that way since my brother has so many things he's never going to be able to do) that if I ever did know how to cope with it, I don't anymore. I mean jeez, I couldn't even be angry without my brother getting involved: as a preteen, sometimes I would get into arguments with my parents (I know, shocker) and my brother would start throwing a tantrum because I was yelling. Which, in turn, caused my dad to snap at me for, you know. Being a normal human with feelings??? And now I guess I'm just out of practice with the whole thing.

I am so tired of being angry and upset all the time. And what makes it worse is that I see the other side of this; I know there's only so much my parents can do, and they are making an effort to accommodate my needs. But I am also so tired of having to understand the other side and having that temper my own thoughts and feelings.

How do you deal with it? Because obviously suppressing the resentment is not the answer; that's just not healthy. But I also don't want to be angry and upset all the time, much less with my family who I love. I genuinely don't know what to do.

My brother is autistic, and on the "higher" end of the spectrum. Ever since one incident, where I found him walking on the sidewalk near my parents' house, and neither of them noticed him leave, I've been having severe anxiety about him "running away," even though I don't spend much time at that house anymore. Also, I've been worried a lot about him having meltdowns in public/lashing out or being violent at those around him that I know he loves & doesn't truly want to hurt. Due to all these things, reguardless of the fact that I'm hardly ever near him, it feels like I'm always being crushed from this unstoppable anxiety about how he'll act. Whenever I do make it back home from time away, it's a question of how he's been acting over the past weeks. This has led me to isolate myself from my family even further, expressing anger to them often. If we're all having dinner on a Saturday night for example, I will go to our upstairs to finish papers or listen to music, instead of engaging with my family. I know it affects them, since I'm already gone so much, but I can't control this anxiety, and all the strategies I've been given (online, therapists, parental advice), haven't seem to have worked at all. The only time I'm at ease is if I know that I can't affect him (do anything) in any way, which is why I'm gone so much. But if I am in proximity to him, it's an odd combination of trying to escape him & clinging to him/constant obsession with if/when he will begin to escalate, which could lead, in my mind, to a violent, or even just loud outburst. If I do catch him in one of these outbursts, I often end up being impulsive, sometimes throwing him into a chair, or even hurting him out of anger and adrenaline. What should I do to improve? I know I can better my relationship with my parents by being able to disengage myself from this anxiety -- If I was able to overcome this, it would mean so much more for those around me, and I think I'd just be a much happier person in general (those around me are quick to notice my drained nature). Thanks so much!

Hey everyone, just need to rant/vent here

My brother has spent years successfully battling severe bipolar I w/ psychotic features. To be fair, is not really disabled anymore. I hope that doesn't get my post booted from this page because I really relate to most everything on here. He holds down a job, but still needs a ton of emotional support from my parents. I've been told my whole life all the things you see on here all the time "you have to be strong", "we can't burden your sibling any more", "you can't be angry ever or blame them in any way". you know, things that aren't really fair to say to kids. I was also parent-ified at a young age and have been a support beam to my parents for years.

I've overcome my fear of partnership which I struggled with for a long time because my family burden is so intense that I just feel it unfair to pass on to anyone else. however I found an amazing man and we are getting married. My wedding is 3 months out. My brother met a girl this past January. He didn't really like her all that much for the first ~6 weeks but, somehow a switched flipped and he is now buying her an engagement ring. Sounds a little bipolar to me but we are all trying not to freak out about the speed with which they are moving. this is his first and only girlfriend.

In my rational mind, I KNOW that the bride doesn't own the months/weeks leading up to her wedding. but, I've spent so long being shunted to the side so my family can deal with the complex needs of my brothers and being traumatized by their actions. so the little kid inside me is just falling apart at the seams of having to share my special time with my brother.

We won't be seeing my extended family before the wedding, so even if he proposed today, everyone will be congratulating them at my wedding, turning mine/my fiancé's day into a pseudo-engagement party for my brother. I want to let go and be happy for my brother. But I can't.

I feel like I am having a little kid temper tantrum and have finally let my parents see my pain after all these years. They were sympathetic at first and tried to talk to my brother over the weekend but now they feel bad about trying to make him see that he's been a burden in my life. He apparently just kinda said that he wasn't and my life hasn't been that hard. I feel deeply offended by this because that's not really for him to decide. He doesn't understand how much I fended for myself emotionally all these years because mom and dad were always tapped tf out trying to care for him and my other brother. His experience with them as parents is VASTLY different than mine, but he has no perspective since he only knows the way they parented him. After the talk my parents just seem to more be taking his side because, as always, they don't want to burden him more.

They are laying down a lot of money for my wedding (maybe 50k when it's all said and done), and somehow I am unhappy. I guess it's true that no amount of money makes up for an attentive parent.

In the last 15 years all I've done is be patient and supportive. Now that I've run out of patience it has brought all my pain to the surface and I'm being accused of over reacting. I feel embarrassed too because I can see my pain is merely an imposition to my family. I'm trying not to even think about what my brothers girlfriend must think of me without having ANY of this context. To her, I'm just a bridezilla who wants to own the months leading up to my wedding. It's not that. My parents have spent way more time/energy/emotional labor helping my brothers the past several months than they have on my wedding.

I just want to be able to swallow this one the way that I have with all the other times in my life I felt neglected but I'm in so much pain. I feel like I'm trying to process 15 years of pain all at once. during what is supposed to be the happiest time of my life. someone please say something to make this better.

I (F 24) have a younger sister (22) with Prader-Willi syndrome, a rare genetic condition which caused her to be physically and (more importantly) cognitively disabled. She is the only sibling I have and I grew up thinking that we weren't so different from the other families, as my parents where loving and caring. As I graduated from high school I joined an online sibling support group out of curiosity and I figured that most of the attenders had at least one more brother or sister: they were never alone when dealing with their special needs sibling and, at the same time, they got to experience a kind of bond that I will never be able to have with my sister. That painful realization started it all, and that light but persisting feeling of loneliness has been staying with me day and night, and I feel bad for my sister who has her own ways to show me she loves me deeply: don't get me wrong, of course she is my beloved little sister and I would give my life for her. It isn't her fault if she was unlucky. But it got to the point that I can't watch vlogs of some youtubers because they are constantly doing stuff with their able-bodied siblings. I'm just envious, and it grosses myself out. I went to therapy for other reasons and my therapist said that I am idealizing brotherhood/sisterhood, since not all able-bodied siblings have a healthy relationship. I know that's true, but I still feel like I am missing something.

Last week we had this Easter lunch with the whole family and my cousins (brother and sister) joined us. They are around the same age as us and when they started making plans for the night, wanting to go together to the club or something, I started tearing up. Of course I lied saying that it was an allergic reaction and everyone (our parents included) believed that, but when I got home I cried my eyes out. I just feel wrong, and alone.

Sorry if this was long, but I was wondering if someone has experienced this or is currently experiencing this, I do need some advice. And please, be kind to me. Remember that I love my sister deeply, despite everything I am feeling right now.

But she won’t. I’m stuck here with him forever. the stress is going to end me .

Hey,

I’m not trying to complain here, but…

I just flagged 4 posts that were from random people complaining about their not disabled siblings. Can we do something to mitigate this, like maybe make the tag not optional and have it say something about “my siblings has a disability” to possibly get the point across? By the time I got to the last one, where he was threatening suicide, I was just over it.

The problem is a lot of times he will not listen to me. He only listens to her plus he has ocd so she has to cue him a lot and point. Then when she comes home she yells at me saying why don’t you listen but I do he just doesn’t listen to me. I tell her all the time he doesn’t listen to me it’s like she forgets or doesn’t believe me? I don’t know I’m tired I want to give up on everything .

So my brother(18) has autism and two years younger than me(F20). We haven't had the best relationship, especially since he started hitting puberty and started being an ass LOL. I'm embarrassed to say but sometimes there are fights that do get a little physical. The only time it got bad prior to this incident was when he put me in a headlock bc he saw it on drake and Josh (his words not mine lol). Until this past week. I was napping and he woke me up and asked me to check something for him. I was still half asleep and said "no I'm sleeping". So he got upset with me and said "gosh can you not be lazy" and smacked me HARD with a pillow. Like yeah it's a pillow but Jesus it was hard. So I got up and got pissed and told him to get out and kinda slapped his arm in a "hey don't do that way" and it just escalated things which was on me. Then he got ANGRY and pushed me and I ended up on the floor and hitting my head on the wall after trying to get him off of me. I lost it and slapped him and yelled "wtf is ur problem dude why would you do that to me" he then grabbed both my wrists and pinned me down with my stomach to the bed and wouldn't let me go. Now im 4'11 and he's like 5'11 and 180 pounds. So l start freaking out and bit him to get him off of me and nothing was working. I was able to get out and just ran out of the house, into my cor and drove down the street and had a breakdow has also done something similar to my mom,but he just held her wrists and didn't push her down. We tried to talk with him about not treating anyone like that since he did start it and to especially not treat the women in his life like that. He did not understand why and just said he feels that everything was my fault. While I shouldn't have escalated, I didn't deserve what happened. I get frequent flashbacks of what happened and the feeling of him on me and it freaks me out. I have been really cold to him and I feel bad because he'll ask what's wrong and I don't tell him because everytime l've been upset over things like this he'll say "geez ur still up about that? Get over it" and takes it personally. I feel bad because I know he doesn't understand things fully and maybe he won't get why this affects me so bad? I usually dont talk to him much as it is be he crosses boundaries a lot but since everything has happened I've been more mean be I don't want him around me and I end up feeling bad after. I just feel rily alone since I don't have anyone around me that has stuff like this go on so l'd like to hear other inputs. Sorry this was so long.

I’m sure a lot of us were tasked with serving as another “parent” to our sibling with disabilities from early childhood, but I’m curious if folks have a similar experience of being told later in life that they didn’t actually do much to help with their sibling growing up.

I spent majority of my childhood watching my brother, and I understand my parents needed help since they both had demanding jobs, but I honestly missed out on a lot of time with friends my age and had to grow up quickly because of the expectations they had of me. I’m guessing my parents are feeling guilty for this, and their way of coping is by undermining things I’ve done with my brother and trying to convince me that I didn’t actually do as much as I think I did.

i remember first watching my brother when I was around 6 or 7 years old. Before I could drive, I got up early to get him ready and on the bus and often got really close to missing my own bus after getting him ready in the morning. I’d watch him until he went to bed after getting home, until I finally joined band in high school and wouldn’t get home until around 8pm on week nights. Once I could drive, I’d have to get up around 5am to get him dressed and drive him to school, and he’d normally have several seizures in my car (he has a lot in a day, so it’s nothing to call 911 about typically, but it’s still scary when you’re alone and driving him). My dad often traveled for work, and I’d have to get up through the night to adjust him AND get up at 5am to get us to school since my mom left for work around 6am. I got in trouble at school pretty regularly the first year of this since I was falling asleep in class from exhaustion. Yet, my parents maintain that I didn’t actually do that much and I’m being dramatic. Their dismissiveness kicked into high gear after they found out my therapist recommended putting boundaries in place around caregiving for my brother.

I started to believe my parents, but now I’ll tell people about my childhood with my brother casually and they seem baffled and tell me how hard that must’ve been, which makes me feel validated but also more frustrated by my patents’ gaslighting. It hurts even more when I think about how much of my own needs I suppressed or handled myself to not add any additional burden on them. Does anyone have a similar experience? How do you cope?

This post has some possibly triggering topics, so please don't read if you are sensitive to aggressive mania, or things like this.

Alright so my brother has Phelen-McDermid syndrome, sever OCD, and Bipolar, he is mentally 3 at age 17. Due to his PMS (Yes that's the abbreviation) and Bipolar, he has really bad manic episodes, where he literally can't control himself, we know this because he would be screaming sorry and crying while throwing things and hurting us. I know he can't control himself, but I get so angry at him, I want to hurt him back sometimes... I don't know what to do? Why do I think this way!? Does anyone have any advice?

Note: My mom is single, and is much smaller than him, (she's 5'2ft and he's at least 5'5ft). She trys her best to protect us, and the youngest 2 always go to their rooms, but I'm the strongest, and I can't just go upstairs and listen to my mom get beat up by my brother. So I always help restraint him so he can't throw anything or hurt anyone. And we have tried to put him is a facility, even though we couldn't bare to leave him there. He was there for a year and a half, we visited him every single weekend, in a different state. Because our state doesn't have anything for disabilitied individuals. We also have 6 RBT's that rotate through out the day. We always have 2 RBTs at our home, my mom had to fight for this by the way. My mom is VERY selective about who is our RBTs, and won't ever let them hurt my brother, not that they would.

I’ve been seeing a lot of studies conducted studying the effects of marijuana and people with autism. In a lot of those studies, youtube videos, and shared stories on WPA4A (an organization dedicated to spreading awareness of this), there are generally positive results where cognitive abilities have increases, anxiety has decreased, and just general mood has improved. It makes me hopeful that this could be something my brother in law would benefit from especially now that his anxiety has increased tremendously.

My wife and I are having a hard time convincing her mother with this data as she is still weary of changing anything with his supplements or seeing a regression in behavior. Has anyone heard of these studies or has anyone experimented with CBD/marijuana products and their sibling on the spectrum? Have you seen improvements and what dosages are you using?

How do you deal with people using the “R word”, making fun of people with special needs, etc. ??? My little brother is Autistic and I am 11 years older than him. I am 22 now and it’s become increasingly more difficult to deal with as I’ve gotten older. When I was in middle school and high school, shortly after he received the diagnosis, I would BLOW UP on people with no issue. Stating things like “is your vocabulary that limited to where you can’t find a better word to say?” or things like “I’m disappointed but not surprised you just said that. Do better”. But now, in adulthood, it is so hard for me to confront people, especially in class or while I’m at work. I just keep my mouth shut because in my experience, people don’t give a shit anyway and will keep on saying it. But it has gotten to a point where I have a lump in my throat, specifically with a couple individuals at school, and I will get so choked up that I have to remove myself and go to the bathroom and cry. For more clarity, I am in cosmetology school. And if I ever heard my hairstylist speak that way, I’d fire them immediately after probably cussing them out. This world is just so unkind and I worry about my brother constantly. Just looking for advice on how to handle people who simply don’t get it. It’s so tough for me.

Imagine a world where we said these things to parents of disabled kids.....

"No sibling is perfect"

"Now make sure you're being an extra good and attentive parent, be extra well behaved, never bicker with your spouse, buy your kids extra toys, do their chores for them/do extra chores, it's hard enough being the sibling of a disabled kid you don't want to make their lives any harder now do you?"

"Do whatever you can to make your disabled kids siblings lives easier"

"Kids snapped at you? They're just stressed, grin and bare it, their lives are hard enough as is"

"Your (non or lower needs) disabled kid is doing the best they can with what they have"

"You have no idea what it's like to be a sibling to a disabled kid, so lay off!"

"Be grateful for what you have, Other parents have it worse!"

"Help your kids out!"

"Don't give your kids any more problems!"

Yall don't think these things are acceptable to say to adults, so why are they acceptable to say to children?

Watch people lose their ever loving minds in this alternate reality.

This is gonna sound mean but I'm resentful towards her. It's always been her. It's always "She's so brave". I feel like people look through me. Even at my old school they always asked if I was her sister and I hated that. I'm the only one in my family who isn't constantly suffering (at least not outwardly) and I've been made to feel guilty whenever I'm struggling and I need help because I'm not struggling as much as them.

Whenever I try and tell people about it they say "Think about how hard it is for her tho". I'm tired of it. I just wanna be seen and cared for like she has been.

My little sister has semilobar holoprosencephaly, and its amazing that she's lived this long. Most babies diagnosed with holoprosencephaly usually don't live past birth and the ones that live after usually don't live past 6 months, but she's managed to live into her 20's. She's heavily disabled, to the point where she's basically an eternal baby and has fought tooth and nail though some real rough patches, especially with c diff and septic shock.

The past month shes been in the hospital with low stats, and the doctors found that she had an artery in her lung deteriorate and was getting blood in her lungs. We thought she was going to die from it, but last week had a successful procedure done that helped heal it. Things seemed like she was getting better, but after I got off work my other sibling called and now my sisters kidney isn't working. Shes not responding to any medications and have one final one to try, but the doctors aren't optimistic about it. If that doesn't work, my parents have the option to put her on dialysis, but they don't want to do that because they feel like it's just prolonging her suffering. Her condition has always been degenerative, and she's been getting worse and worse the past few years. If something doesn't change tomorrow, she will most likely be pulled from life support and pass away.

I feel guilty. I haven't been a good brother to her, avoiding talking to her or spending time just because it always felt awkward to be around her and I think I've always somewhat resented her. I remember being in concerts or sporting events and being embarrassed because I'd hear coughing and then a suction machine going off. We'd be late to almost everything because as soon as we were about out of the door, oops sibling needs a dipper change. I also feel guilty because I'm at peace with her passing. I don't want her to have to keep suffering and I don't want my parents to have to spend their lives having to take care of an eternal baby until the point that they break. But mostly I just feel bad for my mother. Her life for the last 20+ years has revolved around taking care of my sister, and now that's about to be gone. The house we live in was built around my sister, so even being at home will be a reminder of what she'd have lost. Hearing her cry on the phone tonight killed me inside.

I'm driving tomorrow to go see her for what is probably the last time. I'll probably be listening to Eulogy by The Flatliners and Cloud 9 by Volbeat all the way there.

Edit: Thanks for the kind words, and have a somewhat good update. The final medication the doctors were going to cry ended up being partially successful and her kidney is somewhat working again. Not out of the woods yet, but its a start.

I (23) have a younger brother (17) with cerebral palsy. Parents are both 60-65.

To give you a brief summary of my brother's condition, he is not totally disabled, as in he can still communicate and articulate his needs (at least when he feels like it). He has very poor motor skills, cannot walk, has poor self-control, has no ability to logically reason whatsoever, but can more or less read. He also has many "quirks" that genuinely trigger me. But more on that later.

We've lived under the same roof for his entire life now and while childhood wasn't that bad, we had to move to Canada when I was 12 because our home country didn't have the means to accomodate a kid like him. The move was somewhat traumatic on my end and I still feel after all those years that the sacrifices (mainly my parents') were not worth it at all. I always knew ever since I learned about my brother's condition that we will never be a fully functional family, but I definitely didn't think it would be this bad. Whenever we have "family time", it never feels enjoyable because having my brother around is just mentally and physically taxing. Having extended family, friends or even random people when he's around makes me terribly nervous because of his lack of logic and especially because of his lack of self-control. He's a time-ticking bomb that may or may not detonate: whenever we exit a social setting without him doing something cringeworthy, it feels like a million pounds get lifted off my shoulders. He once started masturbating (pants on, thank god) in plain sight when a real estate agent was visiting us. He occasionally pulls stunts like this at school too, along with (apparently) touching girl classmates' breasts. Speaking of school, it has kids with all kinds of disabilities grouped together, so he's not really learning anything there either. At least my parents are somewhat free in the day thanks to it, I guess.

So, to further develop on my brother's "quirks". As a child, he wasn't very talkative, but after he got into school and especially after reaching puberty, his mouth hasn't stopped running. And when he has no one to talk to (even when others are around, actually), he somewhat quietly, albeit still audibly, nonsensically rambles on and on by himself. And he won't shut up even when prompted to. While this per se isn't going to seem annoying from an observer's perspective, having to deal with this shit on a daily basis is driving me insane. Like rain slowly eroding a rock. Even with headphones on, if we are in the same room, I get fixated over his mouth moving and get triggered. I know this sounds stupid, but just being in a room with him inevitably makes me triggered. Aside from that, he also starts slapping himself (head/ears and legs) when hungry. He punches his throat when he has heartburn (he has reflux). Mind you, he punches and slaps himself REALLY FUCKING HARD. Even though his teacher is aware of these things, she was suspicious that he was getting physically abused at home after seeing marks on his legs. You can clearly see a mark on his neck too. After all those years, I can't seem to get used to his behavior. What's more fucking frightening is that I'm starting to unconsciously pick up elements of his behavior: once, I unconsciously punched my throat when I had heartburn myself, and was horrified when I realized what I just tried to do. My communication skills are slowly eroding because of him as well.

Both my parents are vehemently against the idea of institutionalizing him. My mom takes care of his hygiene and of all the small and big things related to his care and education. Despite my brother's condition, I guess she still wants him to be the best version possible of himself. But honestly, I don't know if the end justifies the means: my brother cannot learn anything without my mother inevitably losing her already short patience and hysterically screaming at him. She probably doesn't realize that her fucking hysterics make everyone in the house miserable. When my brother turns his irrational switch on, her default reaction is hysteria. As you could've guessed by now, silence, peace and quiet are almost non-existent in this home. As for my dad, he doesn't care much about my brother, but then again we barely even talk even though we're under the same roof. I've never had a good relationship with my father and honestly sometimes feel like men like him shouldn't have had kids. While he's not a bad man per se, he somehow just has absolutely no fatherly traits in him. In other words, he's just a background character. But anyway, that's already beside the point of this post.

Honestly, at this point, I just don't know what to do or feel. I cannot blame my brother for being the way he is, but I just really cannot love him either and I hate myself for it. I occasionally lose my temper with him and immediately feel guilty afterwards. I can't blame my parents either because it's not been easy for them. Part of me wants to burn all bridges, run away and never come back, but I'm plagued by uncertainty and figure that I'd feel guilty in no time for abandoning my parents. But then again, staying with this family that has never really felt like family is making me miserable. Coming home and being in a relaxed state of mind is a since long forgotten luxury (have I ever known it?). I can't come home without asking myself "I wonder what kind of mess we have on the menu today" with a sigh, even though, admittedly, most days are normal. Well, as normal as they can be, I guess.

And I think what's worst of all is that I can't see the endgame. I feel like I'll never ever get to live a normal life. All I've ever wanted is a normal fucking family with some peace and quiet. Am I too selfish for entertaining such an idea? Or maybe I'm just too weak, I don't even know.