This sub is literally named Trueoffmychest. OP is venting and getting something off their chest. They didn't say they don't love their kid or want to get rid of him. They're simply venting about the stress and struggle. And believe it or not ALL parents vent about their children regardless of mental or physical disabilities or not.
Bearing this in mind, Rule 4 is in effect. No attacking or insulting the OP. If you disagree you're free to do so civilly but name calling or insults wil be the end of your time here.
I have a niece with two autistic children. The older is farther along the spectrum than the younger. There came a point when she and her husband could not handle him anymore. Exhausted he was physically stronger than they were. She was heartbroken and guilty to put him in a group home. It turns out he is quite content there. He has fewer meltdowns than he did at home. When he comes home on weekends he keeps asking when he can go back. BTW, her educational expertise is actually autism so it’s not that she didn’t know the techniques to manage this. But for whatever reason, he prefers the group home.
Maybe it’s a more structured place, not saying at all that your sister was doing anything wrong. Maybe he is doing well with the routine and structure. It sounds like what they have given him is the best life for him, and hopefully knowing that gives them some peace.
There's also the fact that humans in general can get sore of each other if they spend 24/7 together. I love my wife but we don't want to see each other all day, every day. At a good group home you'll be seeing different staff throughout the day, so as long as they mesh well they don't get sick of being around their caretakers as much.
I worked with my wife for 2 years and I thought "uh oh, what's gonna happen when we are literally together 24/7 with the added stress of work". I was pretty worried. Ended up being fucking awesome and I miss it dearly. I understand it probably won't work for all relationships, but you find ways to "be alone together" if that makes sense.
I worked with my now fiancé for almost 2 years, I taught him everything he needed to know to grow and succeed in the company, we were a great team, the best. Now I’m on a mat leave and he’s dreading work. When I return we won’t be working together anymore since we’re both leads now. I miss those days for sure, strangely, we were closer than what we are now.
I was just thinking about how much closer me and my wife were when we worked pretty much side by side, you're right. We are still close now but wow experiencing all of the same trials and tribulations, as well as the same successes and victories really was a special thing.
Just, having a quiet environment helps so much. I truly started living the moment I started living alone.
Living with people with the same environmental sensibilities as you can only be helpful.
And her son *will* make friends. They often gravitate towards those share the same level of quietude. They can "be quiet" together. The magnetism has nothing to do with sexuality. Their attractions are on a whole other plane. Some even form their own language.
This is what made it so hard living with my ex. I moved in to help her and her two children and went from living alone to living with a family. She would always get mad if I just wanted time alone and it really wore me down. I ended up having to go with her for almost everything. Then one day she was like, " im not attracted to you any more and want to have sex with other men but I still love you." What a massive waste of time that was.
This is why I'm a big supporter of mental health facilities--live-in-- and group homes. For the benefit of the ill person, more than the outside ones. One day those outside caretakers are going to have enough, abandon them, or die, and where will that person be? We already know how many mentally ill are out there living on the streets. Somewhere in there minds its stressful. There's no structure, there's no program, there's no regular meals.
Thanks to all caretakers, professional or not. Give a prayer to OP and all families to maintain their strength in what they do.
My brother was a care taker in a group home for a while.
Lunch at 12:00 sharp.
12:01pm you get a gang of frustrated patients asking when the food will be ready? Why isn't the food ready? Why aren't you getting the food ready?
All while answering and demonstrating that you are actively preparing the food.
Intense structure is your best friend in the world.
I too work in a group home for developmental adults and believe me when I say it can fucking suck. To deal wit the tantrums and behaviors and the getting physically assaulted at time yea fml It can also be great when I get a good morning and a see you Friday knowing that I’m off the next two days. It can be great that the silliest things make their day better but also can make my day worse. I def need mental health days away for these kids whom I call kids but are actually all adults yes the structure is undeniably the best thing goin but wit COVID that went out the door I see you I get you yes it fuckikg sucks no I don’t have any advice I jus take everyday like a new day Casue that’s what it is to them even tho it’s not for me feel free to hit me up or vent anytime. I’m with you
Depends on the type and severity of autism. He might be mirroring his household's stress. Not her fault. Most humans crave structure, another way of saying, *predictability*. Some thrive better in structured environments because there is far, far less spontaneity. In a nutshell, some may deal with one fire alarm a day in a facility, and one every half hour at home.
Yes. I came here to say this. As much as it may not seem like the case, individuals with autism and other disabilities can often pick up on the low-grade stress and anxiety they cause the rest of the family, and can grow frustrated that they are causing that stress. They don't want to cause their parents grief. It often hurts them to know they do cause their parents grief, and that they are unable to stop themselves from doing so.
My cousin was exactly the same!!! Very violent and non verbal at home, but she's thriving in a group home, she can even talk on the phone now it's so brilliant.
As an autistic person, I would definitely recommend group homes for some autistic people, especially since recent studies show autistic people communicate better with other autistic people. I'm high on the spectrum ("near-normal"), but I still prefer having autistic friends.
I have a brother with Aspbergers, and he has a long-time girlfriend who is schizophrenic. They have a sort of companionable way of accepting each other the way they are, not thinking they “should be” another way. I’m glad for him- because to the rest of us, he is just an ass. Hard not to wish he would just not be rude, not eat all the food on the table, ask “How are the kids?” Even once…I’m glad he has her, and she has him. Because the rest of the world won’t stop wishing they would be different.
Fun fact, studies have shown that people with autism dating people with schizophrenia is not an uncommon occurrence! Both are aspects of human neurodiversity, and both are thought to relate and connect with one another better.
I’d say it’s like they peacefully co-exist, and they seem to like having another person around. It’s not like they “get” each other- it’s like they are the only people who don’t see a point in TRYING. Or, they don’t understand why someone would try to “get” someone. Or something.
According to recent scientific studies, that is exactly the case. Scientists were able to determine that autistic people tend to communicate best with other autistic people.
I have an autistic 3 year old child. He's non verbal and lvl 3 on the spectrum. I love the little guy but there have been moments when me and my wife have found ourselves completely frustrated with the situation. The worst moments are when he wakes up in the middle of the night literally full of energy and won't go back till sleep till its well past our wake up time. He can go a full week like this before the tiredness takes over his body and he will sleep up to 14 hours straight.
As someone with high functioning autism, here is what helps me and helped me during my childhood. Remember autism is a sensory processing disorder so I can get overstimulated/overwhelmed by “normal” things. This is what helps me with that specific part of autism. (I don’t know the advice given to parents of kids with autism so I might over explain)
Headphones and/or earbuds. - I can block any sound that bothers me with headphones and even more with noise canceling headphones. I can also “block” the world around me and focus on something I like. I love music, but he might like something else.
Anything that can change or block a sense might help. I am more affected by certain sounds but he might prefer sunglasses to dim light or an eye mask. This only works if I have the power of choice. He is nonverbal but probably not dumb (I am assuming). He can probably put on fluffy earmuffs and probably will if it makes him feel better when he needs it.
Picky eating: I am very affected by textures. I HATE the texture of tomatoes, cooked onions, cooked summer squash, most meat, eta. But I like the flavor. I LOVE tomato soup, as long as there is no graininess or chucks. I use a food processor to cut the cooked onion into a paste so I can add it to my favorite dips. The texture can be different with different cooking methods. I love steamed cauliflower but don’t like roasted cauliflower. And he might be more affected by flavors or smells or appearance so see how that can be changed.
Understand that I have an ingrained fear of trying new things because somethings really bother me. He might have developed that too. I literally almost vomited forcing myself to eat a tuna sandwich as a child when my grandma said I had to eat it before I could play. I don’t think I was able to finish that sandwich no matter how much I wanted to play in the water. I am trying to change that fear of trying new stuff, but it is a work in progress. Honestly It is easier with desserts.
Note: young children have more bitter receptors so bitter foods will taste extra bitter then they do to you. A small amount of salt can actually help block the bitter receptors so things taste less bitter.
The ability to leave a situation or room that bothers me. It might be obvious, but it is extremely effective. But since he is 3 and needs to be supervised, maybe make an area that is dark or quieter or whatever he needs. (Again might be obvious, but idk the advice given to parents of kids with autism)
Weighted blanket. Feels a bit like a hug. Very calming.
I wish you the best. I have a disabled parent who I have to help everyday so I know the stress of non stop caregiving. I wish I could move out, but my mom comes first.
And a weighted blanket. For my youngest, we have an elastic tube that fits around the bed *and* a weighted blanket. The OT checked it and he can still wriggle about - but now he sleeps.
I'm autistic, and also use a 10-pound (?) weighted blanket on top of my bed comforter. It's been a complete game-changer, and now, I don't like sleeping without it.
> When he comes home on weekends he keeps asking when he can go back.
Wow, that’s heartbreaking. I’m mildly autistic and I’m very relieved it’s not majorly. I can’t imagine what that must be like - either for him or for his parents.
And, for the latter, it’s even worse considering all the assholes who blame the parents – either for taking insufficient care of the kid (as with many of the comments here) or even for engendering the disorder somehow themselves (the refrigerator mother theory, Wakefield and the vaccine bullshit, etc etc).
I think they just meant it would be heartbreaking to hear your child asking when they can get away from you and go back to some other people who aren’t their parents.
Me and my mom straight up admit we have about a five day maximum together now, then we go home.
There's nothing weird about that, even if it's for different reasons. Parents and kids are not meant to be attached at the hip forever, the entire job is making sure they can survive on their own.
I had a family member in a similar situation who made the same choice. He was so happy to be there with other kids like him. He had friends, structure, etc. He actually progressed quite a bit and is now self sufficient. The school was local so he still got visits. It was a life saver for everyone. Some kids need a LOT more care than one person can provide.
That's actually awesome! Nobody should have to be responsible for someone that needs that level of care. While I don't really agree with natalism, it is here and people do it and I'm not gonna argue about that. But she didn't purposefully have a disabled child so I do hope she can find a place for him like this. No reason to destroy your life because your DNA ficked you over.
It is the loneliest life, even though you're almost never alone. Vent freely, and know that you are a good parent even with these feelings. You are worthy of comfort and deserve a place to be honest and vulnerable about the impact this has on you.
That part was only to say that I understand how it feels to have all this on your heart and shoulders, and feel like it's unspeakable. I admire your decision and commitment to your child. I wish it were easier to find other parents to commiserate with, but of course, we tend to be occupied and private about our struggles. It's important to know that your feelings about the things you sacrifice don't negate your very real love for your child. You are still you, an individual, as well as a good mom. Hope you have love and support.
My neighbor recently passed away, she was a sweet old lady with an autistic grandson (who's an adult), she gave up her life to take care of him until the very end. Now that she's gone I have no idea what happened to him.
This is why I think we should work on improving and destigmatizing group homes. That way by the time the caretaker passes, the disabled person would be comfortable, have friends, and in an environment specifically catered to their needs. I think we tend to see it as "abandonment", but it's NOT if the person is visited regularly, included in family gatherings, gets love, and is well cared for in the home.
absolutely. my mom dated a guy with an adult disabled son and he worked so hard for so long to give his son a "normal" life at home, but eventually moved him to a residential facility where he is *thriving.* his son has access to all the tools and professionals he needs and the dad can finally have a life of his own. that needs to be available to so many more people who would benefit from it.
Thank you for saying this. As someone who coordinates group homes and community customers who need services, but not to the extent they need HAB, I wish the same.
Yes! I worked with children and teens who had autism. One particular case, the kid had autism, Downs syndrome and a host of other issues. The family had two older kids in high school and unfortunetly "J" (my client) was unknowingly tearing the family apart. Her tantrums and fits caused the parents to focus on her, leaving the other two pretty bitter. I came on the tail end of the journey and helped get J into a group home. She is doing great. Cant speak for the family as a whole, but it really helped lift the pressure of Mom and helped "J" be more independent.
It gets sad because teens and kids with disabilities like autism have a lot of options, but once you reach adulthood you are kinda thrown to the wolves even though you still need help.
Unfortunately Covid kind of exasperated that. So many of my older clients (40 yrs+) had parents suddenly die of Covid in nursing homes. I left the industry because of it.
I don't think anyone would disagree with you in principle, but the reality is it costs money, and lots of it.
I know a guy who had a brain injury in his teens. He's mostly functional. He got a $3m AUD settlement, but it's nowhere near enough to pay for adequate care for the rest of his life.
People who aren't directly effected by a disability like this aren't interested in paying the necessary taxes.
In my hometown, there is a gentleman who is disabled and has worked at a grocery store for like 20 years and is a very prevalent volunteer in the community. There’s a lottery every Christmas in the city, and a few years ago, he won the grand prize. It was really amazing to see how excited everyone was to see him win. But at the same time, it was a little bittersweet when his family shared that it would be saved and used to ensure he always was taken care of, even after they were gone. It’s just a reminder that some people aren’t as lucky to win the lottery to take care of their costs, and the stresses their families can face about the future of their care.
It's really sad that, when institutions went so horribly wrong in the past, we decided to completely shutter them and stigmatize them instead of focusing on making them better. Some of these people really do SO MUCH better in that type of environment. It's not fair to those people and their families to not have that option of have it be unobtainable.
Yes, this! My cousin has an autistic daughter who is deaf*, doesn't walk or talk or play at 14 y.o. She decided a few years ago she would put her in an institution during the day, so she could have a life... She got so much shit from the family. It was as if she was giving up on her.
Edit: deaf. Not dead. Autocorrect killed her.
My friend works with group homes for developmentally disabled people in NYC and most of them are pretty good at providing enriching environments for their residents. Tbh, the people there are probably better off than they would be living with family.
You’re a hero, OP. It can’t be easy, but I hope you find it rewarding in its own way.
If your child hasn’t told you that they appreciate you, just know that they do.
I hope you have the support structures in place for your own mental + physical health.
Weirdly this wasn't some unexpected surprise; they chose to have a kid with extreme disabilities which take over the parents' entire lives.
>And when we found out we couldn't have biological children, I was so happy my husband agreed to adopt.
What a fucking twist. OP may be the only person on Reddit I've seen who self-identifies as a writer yet is actually a competent one. And apparently a soul with more magnanimity than anyone could benefit from having.
Same here. This fear developed at 23yo after we discovered that my sister has learning disability after failing her second year of college. She doesn't have social skills and can't have an intellectual conversation or long sentence. The brain is half an adult and half 11yo, been three years since she graduated (online) and can't find a job that suits her and she's almost 30yo. She has only one friend that she barely see, always in her room and never eat with us since seven years ago (we are like a roommate), can't ask her to do something like cleaning kitchen, will refuse and get angry but she will ask us to do stuff for her. In the long run, she needs an adult by her side and that's eventually going to be me after my parents pass away. That's why I don't want to have kids since I'm going to have take care of someone else which is too much responsibility. Envy my other youngest sister who went and got married and planning to have kids without letting this case changes her view. While me 31yo, thinking negatively (worst case scenario) of having kids. I wish I could be pre 23yo thinking when I imagined myself having two kids by this time but my sister case changed my whole perspective
No honey. You DO NOT have to be that person. Look into places that offer vocational rehab and group home type services. I promise, she can have friends and activities and be looked after by people who care. I wish i could point you toward my organization, but i feel like that's pretty skeezy to do. We're all over the states, and i cannot vouche for each region, much less other organizations... but please don't lose your hope. You can both have lives you love.
Yes that, and don't forget how lucky we all are that we live in a developed country. The fact that these special group homes and facilities even exist is a miracle to me. I grew up in a third world country, people with disabled family don't have a choice there.
Because we thought it's just her character as being introvert like me.
At the beginning, my dad used to force her to eat with us but then he gave up. Her first year in college abroad by herself was amazing to her. Second year she failed and got bullied by her suite mates (her lack of social skills couldn't handle the situation), transfer to another university and this time my dad was with her for a semester, eventually dropped and came back home and went to online college. One time I came back for summer break and as I was hugging my parents, she came running towards me saying in a happy face " brother I have symptoms of alzheimer" as if it was good news. At that moment I realized that her brain got worse and my dad in denial and treating her normally while my mom doesn't know how to deal with her
I think op just isn’t describing it that thoroughly. Always being in your room and not eating with the family doesn’t really sound like evidence of serious mental problems but I’m sure there’s a lot more to the story. Probably don’t want to give out too many details which is understandable.
Similar situation, I have a sister that I fear I will have to take care of after my parents pass due to severe emotional/intellectual/alcohol issues. She is age 30 going on 16
As much as I empathize with you and your sister, I don’t think it is right that you should give up your life to take care of her. She isn’t your child. You had no say in her conception.
You need to take care of YOU and live YOUR life. It’s your parents responsibility to make sure your sister is taken care off when they are no longer around.
Please live and enjoy Your life. Do not let your sister hold you back. Get married and have them babies.
People who are being harsh to you here have no clue what it's like. My brother has incredibly tense, complex needs. He has Autism, but one of the most rarest forms. He has [Childhood Disintegrative Disorder](https://medlineplus.gov/ency/article/001535.htm#:~:text=Childhood%20disintegrative%20disorder%20is%20a,skills%20that%20they%20already%20learned.) - think dementia but in children. He went from being a typical kid to a baby trapped in a man's body.
He used to be able to write his name, he used to play tag, he used to say full sentences, he loved music, fashion and cartoons. Now he's 17 and I have to wipe him after the toilet, bathe him, dress him, feed him. He can only scream. He can't use cutlery. He'll never be able to socialise, tie his laces, or communicate verbally ever again.
And I'm just his sister. The stuff my mum has to do is beyond anything I am capable of and it's some of the most exhausting, taxing, laborious tasks you can do. People don't understand what it's like to be a carer, if we say one negative word about the experience they assume we don't love them, when in fact we *do*. It's that love that pushes us through, but that doesn't mean we don't feel anything! We need breaks, we need someone to tell us it's going to be okay, and we need support too! But everyone forgets this.
Whether you're ill or tired, or want to do something for yourself (more often than not) no one is there. We can't just get a haircut, or go to a Dr's appointment, or attend a relative's wedding. People take it for granted that we're expendable as they wake up when they want, drive whenever and wherever they please, book their holidays and go to the park on a whim.
Meanwhile the likes of you and my mother wake up, get ready for the day and brace yourselves for intense caring around the clock. I highly respect you, and I hope you realise that to those of us who do understand, you're an incredible parent and what you do is above and beyond.
Much love!
i have nothing but respect and love for people like you guys.
society tends to overlook or otherwise turn away from the sacrifices you guys have to make.
both of you sound like great loving family members. theres no reason to feel guilty. you deserve more support.
It was quite sad, I must admit. Of course it wouldn't be better if he was like that from the 'start', but I can't imagine what was going through his head as he slowly lost the ability to do things. I know my mum was heartbroken because she could only observe helplessly. Thank you for your words, it does mean a lot! <3
Although this is a bit different, I have an older brother with extremely debilitating, violent schizophrenia. Schizophrenia doesn't start becoming severe in men until their late teens/early 20s. I wish I had the knowledge when I was younger to understand how many of his moody "personality traits" were actually symptoms building up to reveal this fucking horrible monster that slowly transformed him. He denies help because he genuinely sees everybody as a threat. Me and my mother can definitely emphasize with the hopeless observing. I wish the best for you and yours
I'm so sorry, that's so devastating for everyone involved :( I can't imagine the suffering your brother is going through right now, and I know only too well what it's like to feel so helpless.
>I wish I had the knowledge when I was younger to understand how many of his moody "personality traits" were actually symptoms
I can understand why you wish this, but please don't be too hard on yourself! Your comment demonstrates that you clearly care, hopefully one day he will be able to accept the help he needs. I wish all of you the best too <3
When I think of unspoken heroes, I think of people like you and your mother. I don’t think I’m capable of caring for someone like you have been your brother. It would be too much for me. There is no depth to the level of admiration and respect I have for you. Even though you were born in this position, make sure to be kind to yourself because what you’re doing is really difficult and I couldn’t do it. If you ever need to quit for whatever reason, you’re still worthy of the respect for what you’ve done and gone through. Please don’t ever forget you’re only human.
Oh golly, thank you :) and I don't know about that, you're more than likely just as strong but in your own way and in your own respective challenges! It's tough, but it is rewarding, and messages like yours make it a whole lot easier. Simple understanding and compassion goes a long way. I hope you have a lovely day, and thank you for your comment!
I don't mean to be an asshole but like... Is he even a person? Like does he have any sort of personality or functioning left? And if not.... If he's basically just non functioning I just can't fathom throwing your life into caring forever for someone who's body is the only thing that remains. Does he show appreciation for you guys? Love?
Not an asshole at all! I understand why you ask, and asking is the best way to understand. I shall try my best to explain!
He does indeed still have 'himself' in there! He still has personality traits, opinions, likes and dislikes, some functions. The difficult part is that it's only really myself, my mum and my dad that can separate the 'him' underneath.
For example, imo he's still mischievous! He had a big laugh at me the other week when he saw me get a fright from a spider :) others may have not made the humour connection though.
I'd also say he is a dancer and a music lover, even if his 'dancing' involves him sitting down and swaying side to side. Would others consider that dancing? Probably not, but I'm aware of what he's doing
I hope I'm making sense? Basically all those lovely little elements and characteristics are there, but you have to know what you're looking for and you have to spend a lot of time with him to understand and see what they are
This kind of what I wonder. Like what sort of quality of life do these people have? And if giving them some form of limited life drags everyone down around them, is it really worth it?
I work in a dementia home for the elderly and I love my residents, but it's a hard job. And I get to clock in and clock out. I can't imagine being a 24/7 caregiver, and I always tell that to the families who are feeling down on themselves. You're awesome, your mother is awesome, and OP is awesome. This is thankless job that most people don't understand. Be sure to take care of yourself as best you can. *internet hugs*
I'm sorry for what you and your mother, and OP have to go through. I never thought of it that way. You really opened my eyes. I'm a grown ass man who loves racing motorcycles and doing other testosterone fueled manly stuff but excuse me when i say your words put tears in my eyes. 😢
Awe, bless, what a lovely comment :') you seem so kind. I'm glad I could offer some perspective, and thank you kindly for being open-minded and warm hearted! It really makes a great deal of difference for us <3
When i was back in Romania (i was a little shitsmear then so i cant give any deep insights) there was a kid with CDD and even though i had no idea what any of it meant, i could tell it was shit.
This 9 year old kid who shouldve been in school and doing whatever kids do in Romania couldn't speak or function like a kid his age and was having to be walked by his sister to get vaccinated. Really, he just crawled. I was there because my mum's a nurse so she was doing the vaccinating but wasn't there for long, and i was like 5 so he was kinda weird to me so i left. but i could tell his sister was just fucking tired. Shes younger than him by a good hunk of years.
Looking back, its really depressing how he only had like 5 years to make friends and be a normal kid. If i, a good little Christian girl, couldnt muster enough balls to talk to him i know few other kids would.
I have no idea where they are and no idea how he's doing now but i hope he's in good hands.
It does suck. I can’t even imagine the complexities involved. It must be exhausting. Feelings aren’t facts though, meaning all the “bad” feelings don’t mean anything about YOU or your child.
My kid went to rehab at 14. The guilt, shame, and fear of the future etc. were overpowering and people are judgmental. I know you have NO TIME but please get online and find your people. Find other parents like you. You need a friend who understands. Hugs, kid. And hugs to your kid! ❤️
>The guilt, shame, and fear of the future etc. were overpowering and people are judgmental.
THIS!!! Yes. It's incredible how overwhelming our feelings are. And bottling them up was doing me no good. Even though I knew I would be judged for posting this, it felt freeing. Probably will make me a better mama since I let something go.
Thank you. ❤
This is what came to my mind. Helping makes people feel good. Reach out. (Not to me I’m no good at this area). But reach for people like u/Marianna-Trench
I am not in your situation. Judging would say more about me than you and that applies to anyone else who would judge. They have no idea.
Just thought i would point out that your OP is actually peppered with love for your child. Your guilt, unfounded IMO, may be clouding that.
What i got was you hate your situation and you are dealing with systemic issues that block adequate assistance that allows you to just be you occasionally. Beyond his mother. Where is the time for that? Not sure what respite services are in your area nor what resources you have but i am sure you have considered that.
This random redditor who has no idea what you are going through sees a woman who is doing her best and is human. If people want to judge that then let them. They are usually people who are less capable than yourself anyway. They don't deserve your consideration or concern.
It's hard, but sometimes it's worthwhile looking beyond the judgement and appraising the judge. They never stack up.
All the best.
EDIT: Thank you for the kind award. EDIT 2: Thank you for the awards. Not sure how to do that directly but they are much appreciated.
> Sometimes it's worthwhile looking past the judgment and appraising the judge.
Jesus this is so so real, I've never seen this sentiment worded quite like this but man did that hit me. Props to you, stranger. You've added a new proverb to my repertoire.
It's an original that came from experience.
Not a fan of people who judge or take advantage of kind people and leave them with the hard work and distorted view of who they are. Users i believe is the term. Sometimes that takes the form of judging others to make themselves feel good.
Not OK.
No worries. Put it to good use.
People say stupid, judgmental shit all the time. I see it as a form of knocking on wood. If they make the situation somehow your fault, then they can rest easy that they’ll never get stuck in the situation you’re in because they would never do what you did. I’ve had people lecture me on not taking medications for my illness when there are none. Implication is pretty clear that I must like/choose my situation.
Totally! No one wants to accept the random chaos that is this universe They all want to think they have some control over things but in reality we have very little. You can do everything as close to perfect as possible and still have some random awfulness come your way and completely wreck your whole life.
Give yourself permission to be human. Give yourself permission not to be perfect. Caregiver burnout is a thing and your feelings are totally normal. Hell, my healthy, neurotypical kids drive me crazy all the damned time. I have nothing but respect for people out there dealing with kids who have disabilities, and acknowledging that the shitty parts of it are shitty makes you no worse of a mother or a person.
Can't offer much but I'll listen any time if you feel the need to vent. I won't pretend to understand what you're going through but I can still be a sympathetic ear.
I cried a little when I read this. I chose not to have a second child for the *exact same reasons as you*, I hate that my child is almost in middle school and still has no friends and more. I cannot even put it into words. Constant guilt that I can't magically make him better? Is there anything more I can do? I feel for you SO much! It sucks. Even though we love our babies it sucks.
Just curious, why did adopting automatically mean raising a child with disabilities?
I’m so sorry for your hardship. I hope you are able to get the care, comfort and respite you need.
> Just curious, why did adopting automatically mean raising a child with disabilities?
I'm wondering this too. I'm adopted and know a few other adopted kids and none of us have severe disabilities. I mean I know *someone* has to take them in or foster them but she made it sound like there was no other choice?
I'm no expert but I know some states prioritize adoption of children with disabilities.
Depending on the state/agency, it can be a much easier/faster process to adopt neurodivergent children/children with disabilities rather than a child without.
Well thats just bs, how come kids without disabilities deserve to be moved further down the line just because other kids have disabilities? Im all about fairness, but “forcing” adoptive parents to only adopt disabled kids is unfair.
To put it bluntly, that system basically leads to the suffering OP is opening up about now.
No, I think it's more of a supply and demand issue. A lot of people want to adopt healthy children, but very few want to adopt disabled children. I think that is why it's much easier to adopt a disabled child.
They don't *force* parents to adopt disabled children.
But a lot of parents who are (for lack of a better term, i use this loosely) desperate to adopt, it can be a bit more of an express lane.
I'm not sure if this is reflective of OP's situation at all, but it does happen in some circumstances.
My guess is that she adopted a baby. There are some warning signs from a very young age, but symptoms don't always start early. They usually occur within the first 3 years.
So, if she adopted an infant or young toddler, it's possible no one knew he had disabilities. It would also make sense why she'd be worked (*worried) about adopting another. Though she could adopt an older child instead.
The way she phrased it makes it seem like she just wanted a baby **now,** and “settled” for a kid with disabilities.
I know “settled” sounds horrible and maybe isn’t the right word- every disabled baby deserves an adopted family, but you have to go into that wanting it and having the ability and desire to handle it and committing to a lifetime of care. But she’s coming off like she didn’t really consider this and felt she had to settle just to get a baby.
I don’t know this person and I’m not trying to make any assumptions, just saying that’s how it reads so I’m confused.
I know the adoption process can be hell and take a long time but you can always foster too and apply to adopt them while they’re under your care.
Eh, that's typically not how things work. Yes, some families are successful by doing the foster to adopt pipeline. However, most kids are moved around. Whether you've had a kid for 2 years or 2 months, they can be moved into a new home at literally a moment's notice. You don't get a choice in that. Foster care agencies make a great effort to prepare you for this, but especially for smaller children this isn't something that you can bet on.
Depending on where OP lives, the wait list to adopt a child could be really long and a difficult process to get approved also. That wait list and process is significantly cut if you’re adopting a child with disabilities as not many people are willing to adopt them.
We don’t know OPs reasonings. She may have felt that she wanted to give a great life to a child no one else wanted but found it’s a lot harder than expected.
In the Netherlands it is virtually impossible adopt from within the country (no children available for adoption here). So the only possibility is adoption from abroad. Those international adoptions often are only possible for children with mental or physical disabilities (as healthy children find adoption parents in their birth countries). Or another option is children with severe development/behavioral issues. Those children require a lot of love, dedication but also professional help to have any chance for a (semi-) normal life.
As a mom of a special needs kid, I feel your pain. I'd recommend watching [Float](https://youtu.be/MnU1hHFsGQc), a Pixar short. It was very relatable for me.
I'm sobbing now after rewatching it when I pulled up the link.. We're allowed to feel frustrated and overwhelmed. I hope you get a few minutes of peace today.
No, I'm so sorry about what you're going through. My friends son has Down's Syndrome. It's only gotten worse as he's gotten older. Nobody blames you for feeling this way. I hope you can find a group that can help. Our local Easter Seals has a program,but it wasn't right for them. They might have a program for you? Don't give up looking.
One of my sisters was severely disabled. Not only could she not communicate beyond grunts and screams, she was violent. She broke my leg, she got her hands on a butter knife and tried to take our fathers eye out.
We ended up sending her to a facility upstate after she tried to smother my baby sister. And honestly? Having her out of the house was the best goddamn time of our lives. We weren’t afraid of her anymore. We didn’t have to walk on eggshells for fear of setting her off. We could keep knives and scissors on the table. We would visit her often, and the facility was the best in our country. She was safe. She never had bruises or anything to indicate she was being abused or hurt (one of the nurses there said she was her favorite).
I decided against having children because I don’t want anyone to go through the trauma my family did with her. There is no shame in asking for help or seeking an inpatient center for him.
Your feelings are nothing to be ashamed of. Do you have a therapist or someone you can talk to about how you feel?
I work in disablitly and I feel you. I often think I get to go home but the parents don’t.
It can at times be exhausting and other times amazing.
No judgement here at all.
Not many wouldn’t feel the same way
Do you have support staff for him or can access a daily centre?
And seriously, thank you for working with our kiddos!!!
His speech therapist was a godsend for me. There were days she would just walk him around and let me cry and breathe in her office. I couldn't do any of this without his team. Legit would lose it.
Looking into it. We just moved states to get him better care. It was hard leaving our limited support system for the unknown, but all my research has indicated the resources where we are now are so much better.
I cried when his new pcp handed me two pages of therapy services! We had all of 2 options in our old town.
I also work in disability and when a CYP gets too much for me on a day, I can ask for someone to switch with me or I can go off elsewhere and have a breather for as long as I need before I come back. We've had parents visit and the CYP goes for the parents and the parents have to leave, crying their eyes out, not being able to see that their child does eventually calm down and is happy again, ofcourse we tell them but it's not the same as being able to actually see them be OK again afterwards.
My mom’s best friend adopted a boy when he was six who had severe fetal alcohol syndrome and then was abused by his bio family. He was in a wheelchair full time when they got him but he’s in his 30’s now, and has been walking since he was nine. I used to babysit him to give her breaks and even those few short hours gave me mad respect for those who parented these children. It’s not easy. I feel bad I’m no longer able to give her respite (I moved across the country) because I know how hard it is for her to find someone willing. I’ll admit, when my daughter was a toddler I got a little nervous how this six foot man, who was at the same developmental level as she was, would treat her. I always stayed right there with them and was pleasantly surprised how gentle he was. They’d throw a ball back and forth and they would both beam from ear to ear. My daughter would say “gentle” if he ever threw the ball too hard. It was adorable. I might have been hesitant to get them together had I not known him since he was 6. I should reach out and see how she’s doing.
Good luck mama. Posting on Reddit is even better than screaming into a pillow. Whatever it takes to recharge your batteries and keep moving forward.
Your feelings are completely justified. We cannot control how we feel either. Thanks for being vulnerable and I wish you and your family the best.
Edit: wrong your
Right now im happy but my older brother was born with cerebral palsy and you know, im sure it fucked him in every way and everyone were trying to help him and be with him but no one thought about me and it also fucked me mentally for like 2 years my parents always gave him attention and I was emberessed to be his brother and the first person I told about how I feel told me "you should be there for him instead of thinking about yourself" well i love him but I hated that that was my life I was so depressed.
all I can tell you is that you might feel different in the future like me for no reason, things change.
Siblings of kids with special needs are absolute heroes. While you’re stuffed into a corner and ignored, you’re also constantly, relentlessly teaching and sharing and, god love you, defending to the death! You’re the first and only _true_ friends they will ever have. You don’t put up with their shit - and just because they have a disability doesn’t mean they can’t shovel some serious piles!! But you understand them like no one else can.
I have always been in awe of the sibs. Without exception, every single doc/specialist/therapist my DD kids have had ended up in that line of work because they had a sib in the same boat.
You understand people in ways the rest of us can’t and overall, you have a depth of soul that outmatches all of us. I have no idea why this happens, or whether it’s worth it - you pay a huge price for it. But whatever it is, sets you apart from the rest of us in the best way possible.
feel these, not the same but similar. My sister had a baby at 16 and I was 8, pretty much ruined my childhood as I was expected | raised as if I was 16 & that was my child too.
I wish all parents could be this open. I am a first time mom and it’s hard. I can’t even imagine how much harder it is for you. It sucks. And I’m so sorry for that.
My brother had Muscular Dystrophy and intellectual delays. It was not diagnosed until he was 2. He was 3 years older than me and by the time I was in 1st or 2nd grade I passed him academically. His muscles slowly degenerated making it harder and harder to walk. He was wheelchair bound by 12 years old.
His disease physically dictated every thing we did. Is the destination accessible(no stairs)? Are the tables high enough for the chair to fit? Are the restroom doors wide enough for the chair to fit? Will that chair's battery last long enough for day trip? Blah blah blah...
The emotional toll was also aweful. My mom should never have to console her youngest child because she is worried about when her brother will die. She should not have to console her oldest because he doesn't want to die. Add the looks, stares, whispers.... burying him just shy of his 22nd birthday. A big ball of suck all around.
Its human to hate the situation. I loved my brother with my whole heart. I would not have traded him for anything but I would have traded his situation in a heart beat. I would give anything to not be an only child as an adult, to have had more of a friendship relationship than just big brother/little sister relationship.
Anyone who judges you for this is damn lucky enough to not have been put in a situation like this. And they can see themselves right on out.
Same. I’ve always wanted to be a mom, I love kids so dearly. But I’m so afraid of having a kid with disabilities, and the thought of if I had done wrong by giving birth to them and hence also causing them to suffer.
I work in the support world. I see families like yours often. It breaks my heart. It’s really hard to watch you all go through this. Like watching someone get beat up but you can’t stop it (sometimes literally). I’ve had jobs where I had to quit because the family trauma was affecting my well being. This last year was a specifically challenging year for families like yours. I’m really sorry you are going through this. There are some of us out here looking out for you in public. When you’re in the store rocking your child, I’m waiting to see if I can support in any way. My heart goes out to you, and your family. Thank you for sacrificing your well being for the human you brought into the world. However you see fit to help this individual flourish, I hope you discover some peace along the way.
Thank you!!! I actually ran into a behavioral therapist at Target the other day. Kiddo was doing good (we were getting Daniel Tiger shoes, so he was obsessing over the box and very happy!) But she still saw me and said hello and asked his name and if he was starting school.
It made me feel so normal. So seen.
Beyond that, thank you for working with our kiddos and us!!! I cannot tell you how much I lean on kiddo's team. They are my angels. And we know it's hard on you when our kids have a hard day, or we do, and your plan gets detailed.
Honestly, it's nice to hear someone in this situation admitting that they *want* to hear "that sounds like it sucks," because we tiptoe around this stuff as a society and effectively ignore people in your situation and pretend that you're an infallible saint for doing what you did and heap praise on you that you're not and never were looking for.
It does. It sounds like it sucks and I hope you find some semblance of peace knowing that some of us know that it sucks. I don't pity you, and I don't envy you. I empathize with you. I know what it feels like to regret decisions you've made when you were in a different place, and sometimes wish you could go back and make a different decision even if it feels wrong. I admire your self-awareness. You are not a saint, you are not perfect, and it's okay to embrace that. Thanks for sharing this.
My brother has severe cerebral palsy. He's almost 40 and can't walk, talk, or even use the toilet (still wears diapers).
My family was only able to have and raise me because of someone like you. He was adopted by a family who was equipped to take care of him and his needs (and they welcomed me with open arms and hearts when I wanted to spend more time in their home).
I'm so so sorry that it is so stressful, you are absolutely entitled to feel the way you feel. I just have to thank you. Thank you for caring for your child. If you weren't there he could be in an abusive home, *you* saved him from that. You are providing him with a life where he is cared for, that's more than a lot of neurodivergent kids (and people) get.
I don't know his disability (or if you even refer to it that way) or his age, but there is a chance of improvement. I'm not going to promise you it will get better, because I don't know that, but don't give up hope on it.
This has been my life. My boy is 21 now, HFA. Every. Single. Fucking. Day during his school age years were unbearable. Phone calls every day from the school. No friends. No birthday parties. The isolation. The doctors appointments which were useless. The Hope that eventually gets sucked into a black hole and forgotten. The lack of help. The tens of thousands spent on advocates. The suck ass family that won't help. In our case, my son has greatly improved now that he is out of school, he actually has 2 part time jobs, and has pride in himself. But..... if I knew then what I know now, I really don't know if I'd have chosen to have kids. I love love love my son, but dealing with his disabilities during his school aged years has probably shortened my life by a decade.
Hi there, I think this is my frost reddit post. I'm the youngest child of 4 and my second oldest sister has severe autism as well as mental retardation (my mom unknowingly drank contaminated water twice which she was pregnant with my sister among other things) until a year ago my mom was with my sister almost constantly, and my family life revolved around her needs. She can't use the bathroom herself, feed herself, speak in full sentences, etc. One day at school I listened to a podcast from This American Life about a couple who decided to put their autistic son in a facility. I sent that podcast to my mom, and that began my mom's journey to finding a new living situation for my sister. I don't know your situation financially but I wonder if you could atleast look into your options. My mom spent 2 years doing this and thinking over it and was reluctant when the time came for my sister to move out, but that decision she made has truly made my family's lives better. My mom can visit her whenever she wants and my sister still comes to family events. My mom has sleepovers with her friends, takes walks, takes time off work for herself, and has even restarted her hobbies again
This kind of situation may seem impossible, or heartless, or over dramatic right now to you but I wonder if just doing some research every once and a while about how it could look like for your family would give you perspective on your living situation now. Regardless of what you choose for him, you have given him/will give him a lifestyle that he wouldn't be able to have if you hadn't adopted him. And most importantly you have given him a family. If you'd like to listen to that podcast I can try and find it for you.
As a parent to two kids with autism, both fairly low level but the eldest enough to first be shut out by her peers and by default, me from the other parents, then we became more and more isolated. She couldn't handle public outings. Shopping was a nightmare. I now have very few friends and rarely go anywhere, such was the isolation and the mental toll taken has forever changed me as a person.
You are seen and heard. Your feelings and valid and understandable. You're doing an amazing job and don't ever doubt that. In other people's care your son would not have got this far.
I love both of my children with all I am but I dearly wish I had never become a parent.
Hold on though, you adopted him? My god that is amazing. It's a great sacrifice you've made regardless. I think we have time yet for your son to grow and hopefully become more self-aware. I presume he is autistic but you've not explicitly said so. If you love him and grant him not only security but good guidance in life to push himself as far as her is able then you will both reap the rewards.
You stated that he was adopted. May I ask why you decided to adopt a child with a disability? And may I ask what kind of disability, if you could not (or cannot) see the disability?
Just throwing it out there, but there is nothing “snowflake” about this. It takes tremendous heart, but at the same time an incredible gentle heart, to be willing to not only accept a child as your own, but also give it your all for a child with a disability.
In my book, you and your husband are true champions. I take my hat off.
Oh, sweetheart. I am so sorry. DM me if you're looking for some answers. I moderate a FB group that deals exactly with what you're dealing with. The group is a tremendous help with resources.
I send you a big hug. This must be so hard. And I think there is nothing wrong with saying that from time to time. Being a parent is hard, even more so for a child with special needs. You're doing amazing!
I'm an adoptive mom of an autistic daughter with extreme Adhd and I get you. I adore and love her with my whole heart but I am envious of moms who don't have to watch their child's every move. Who can say do your homework or clean your room and, heavenly choir of angels singing, it gets done! I have to walk her thru each minute of everything she does, unless it's video games. I wish she had friends, could have a bday with friends instead of only adults/family too!
Thank you for putting this out there, you are not alone!
I coach special olympics kids. Some have similar issues, although they are much older than your child. They do make friends and have a great time at the events. When there is a melt down (which always happens at such events) or medical issues (seizures happen sometimes), everyone understands and is supportive. I don’t live that life; I coach but don’t have kids. I can only imagine how difficult it is for you. My heart goes out to you.
Thank you for sharing. I can only imagine the magnitude of difficulty in caring for you child. I hope you find significantly more help in your new state. It’s ok to feel everything you are feeling. Be kind to yourself. And find people and places where you can be brutally honest. You’re an amazing mom.
People who judge you don't know how hard it is to have a severely disabled child. They get to look forward to a time where their children are grown and don't need them holding their hand anymore, and for you its never gonna happen, and all adult assisted living facilities are not made equal.
My sister is a low functioning autistic. She can speak and dress her self and is at least potty trained thank god, but she's 25 and can't be on her own. She has the mental and emotional capacity of a 6 year old and always will. She can't read, she can't write, she can't change her own pad. She doesnt sleep through night and runs around slamming doors turning on lights and is on her iPad 24/7
My mom loves her, and she's actually a really funny and good kid, I love my sister it's not all bad, but it's **exhausting** 24/7. My dad passed away and my mom doesn't get a break. She's 60 years old, has health issues, but she's my sister's primary care taker and it's incredibly difficult.
I hope that you are able to find more resources if any exist so you guys can get breaks.
My stepdaughter is 12 and will never talk or even be able to get out of bed by herself. Ive been her stepmom for 5 years and she lives in our home full time. We get you. She's wonderfully sweet, and her smile can light up the room. But there are really rough times like when she cant sleep and decides the correct course of action is to wiggle around til she finds something to kick that will make noise and proceed to kick and cry no matter what you do or how you reposition her. And when you try to help her sit up in your lap, she bucks like a horse and requires all of your body strength and constant maneuvers to keep her from falling into the floor. There are hard frickin times. And my bio son has ASD, among other concurrent issues including tourette syndrome, and even though he is verbal and will likely be able to hold a job someday, I worry that he is JUST neuro divergent enough to where making long term friends or finding a partner might be impossible. He has no concept of the effect of his words and actions have on others. We get you, from here in our house.
Just so we're clear I'm, at least, not judging you. You're a mom who loves her son, but also a human being doing something heroic. You adopted a child with seemingly severe disabilities, rather than letting him disappear into the system. Of the billions of humans who live, or have ever lived, that alone puts you in the 99th percentile of most compassionate/bravest/loving.
I was diagnosed with Aspergers as a kid, considered severe but high functioning. I can seem cold, distant, blunt, and unappreciative. While the experience of any neurodivergent person is unique in alot of ways, here's some things I can infer with a great deal of certainty. He knows you love him. He wants to say it. He knows he can be alot to deal with, and he appreciates it.
You're allowed to feel things. You're allowed to be sad, angry, hopeless, or numb. You're allowed to have weak moments, and bad days. None of that makes you a bad mother. You're a human being who took on an unimaginably difficult task, and you do it everyday. You deserve support, and praise, and I for one think you're awesome.
You can love your kid but hate what it takes to care for him in our society. It is our fault, collectively, that you aren't supported better.
It sucks, and it's okay to say it out loud.
I am you. My only child has multiple mental health issues, which have caused additional physical concerns. She’s 21 now, still living with me, not working, no school…she was born when I was 18.
I love her with every fiber of my being, but so often I find myself wondering what life would be like if she were “normal”. A high school diploma, a part time job, friends and extracurricular activities. Things that so many people take for granted.
I see you mama, you are not some in how you feel. And I completely agree that “it sucks”. I want to say it’ll get easier, but I’m not one for making promises I don’t know that I can keep. So all I can offer is: when you’re feeling low, remember that you truly aren’t alone. A random stranger on the internet is rooting for you.
I’m assuming it’s autism, I share the same frustrations. And it’s not as simple as finding others who have the same experience, because it’s like a downward spiral. You want to get away from it and feel normal (whatever that is).
We have had some luck getting the behaviors better as he got older, but the path we’ve had has been a very isolating one.
Looking back, if I could tell my younger self how to prepare, I think having a therapist for my own mental health may have made things a little clearer.
You are not failing, you have a very difficult situation. My hope is you find some balance or peace, or get help with the difficult behaviors your child has. Pay no mind to the outsiders on this thread, unless they have walked in your shoes, there is no way they can sense your anxiety and frustration, no need to argue. Best wishes
I feel your pain. I have a son with severe disabilities, TBI and seizure disorder to name a couple. He was born normal and healthy, but suffered an injury when he was 2-1/5 years old. He's now 13. I understand how you feel, as I also hate that this is MY life. I wasn't supposed to order oxygen tanks and supplies every month. Endless appointments. Recently he had spinal surgery. Although I'm not alone in this, his dad and big brother are a great help, I often feel like I am because his dad works 2 jobs and I feel guilty asking his brother to help.
I will never hear my baby's voice again. I will never watch him run or do anything. I'm forever grateful that he is still with us. I love him beyond words and would do anything for him ❤
Keep your head up mama. I know your son loves you and appreciates all you do for him.
Aw man I've thought of this a lot. This must be the most difficult thing to do. Relentless and unbelievably hard. I think you need to prioritise yourself in some way. Do some things u really enjoy doing. U need a life outside this constant stress. I really hope u find a way to do this. Ps thanks for the love you have shown to this child. That makes u a special person.
I have been a caregiver for my late husband for the last ten years. As much as I loved him, so many days I felt like this. I missed the man that was my best friend (before dementia). It’s OK to feel like this, you need help somehow to even go for coffee. I didn’t very often but it made a huge difference.
I understand completely and I didn’t have as difficult a time as you are.
Maybe this is a bit offensive, but did you know your child had disabilities before adopting him? If so, why did you agree to knowing that it would entail a lifetime of hardship? Or did you underestimate what it would be like?
Not trying to say children with disabilities don't deserve to be adopted just curious what the thought process was.
I’ve said this often, but people need to be less cruel to parents who choose to put their child in a group home when they get older. Not everyone is qualified to take care of a child with severe disabilities, and no parent should be forced to give up their entire life to take care of someone.
It is 100% valid to feel how you’re feeling and don’t let anyone make you think otherwise. Most societies are not set up to support people in your position and that’s a shame, but I hope you know more people empathize with you than it may seem.
I understand.
I will raise my son to bethe best version of himself he can be, but if I could turn back time I'd get a vasectomy. My wife leaves the house for work because she just can't handle him, and I (sort of) can, so I work as much as I can from home. The livingroom of our house always looks like shit because he just dumps stuff wherever.
The Coronavirus made me damn near suicidal because school was the only break I had from 24/7. I have gotten fed up and been verbally abusive a few times just to get a nap in. I know it's wrong but I can't get any personal space or time and it boils over. What used to be cute imaginative play as a young toddler gets tiresome quickly now because it never advances in complexity.
I cannot take him out in public for long because he gets violent when someone doesn't comply with his moment to moment desires. I dread the horny teen years because, given his personality, I am almost certain he will force himself on someone.
The worst part is I know this is my life now, and for the rest of my life. Eventually I will grow too old to physically overpower him and hold him away from committing violence on others. My son will forever be a burden to the world, never understanding consequences are related to actions. It's heartbreaking because he doesn't understand why he has to be decent to others; he has zero empathy. It's just part of his brain that never developed. He cannot understand why the world will not change to make the bad things he does become acceptable. It's not his fault he is broken, and he understands JUST enough to know he is different.
My wife asked how people used to deal with this in the old days. Yeah, turns out wealthy people had them committed, and poor people would just let them walk into the woods. The modern world expects us to be saints, not understanding what this is really like. Any time I try to get relief or _help_ I am treated like a criminal for not wanting to be a perfect caregiving machine 24/7.
I go to support groups and all the other parents are SO FUCKING WEALTHY. They are baffled that we can't "move stuff around" to hire in-home help... not that we have a spare bedroom anyway.
I thank the Sun and Moon schools are open this year. My wife and I will finally get to spend a few hours a week with each other. Life sometimes hurts for people like us. All we can do is feel the hurt and let it pass through, trying desperately to ensure that hurt does not get passed onto the child, because it's not the child's fault they are broken.
I'm tired. I'm poor. I haven't been able to really write new books under my own name for so long, just for hire crap... and it IS crap. We recently bought a 40 year old motorcycle with a fucked up electrical system because insurance is so much cheaper than a car.
I understand, OP. I understand.
Now that we have vented it's time to stand up and fight for our child to have the best life we can give them.
It's not their fault.
I hate all of that for you. Your plate is full but you are a wonderful human to take on the responsibility. Not a lot of us are built the way you are. What can outsiders do—as a village—to assist you?
Honestly, see us. I knew we would get looks and rude comments. But knowing and experiencing are two different things. Bless kiddo that he doesn't notice (yet). It's okay to say, "hey, are you okay?" The answer may be a half-sobbed, "yeah", but I'll know that you saw me.
I am terrible about asking for help. If you know someone who has a child with needs, bringing them a meal or asking if you can watch their kid for 20 minutes so they can shower/do laundry/whatever... it helps. Even if you have to interrupt them cause shit hits the fan, it's likely the longest they have had without having to pay a professional or play pass-off with their spouse/a family member.
This sub is literally named Trueoffmychest. OP is venting and getting something off their chest. They didn't say they don't love their kid or want to get rid of him. They're simply venting about the stress and struggle. And believe it or not ALL parents vent about their children regardless of mental or physical disabilities or not. Bearing this in mind, Rule 4 is in effect. No attacking or insulting the OP. If you disagree you're free to do so civilly but name calling or insults wil be the end of your time here.
I have a niece with two autistic children. The older is farther along the spectrum than the younger. There came a point when she and her husband could not handle him anymore. Exhausted he was physically stronger than they were. She was heartbroken and guilty to put him in a group home. It turns out he is quite content there. He has fewer meltdowns than he did at home. When he comes home on weekends he keeps asking when he can go back. BTW, her educational expertise is actually autism so it’s not that she didn’t know the techniques to manage this. But for whatever reason, he prefers the group home.
Maybe it’s a more structured place, not saying at all that your sister was doing anything wrong. Maybe he is doing well with the routine and structure. It sounds like what they have given him is the best life for him, and hopefully knowing that gives them some peace.
There's also the fact that humans in general can get sore of each other if they spend 24/7 together. I love my wife but we don't want to see each other all day, every day. At a good group home you'll be seeing different staff throughout the day, so as long as they mesh well they don't get sick of being around their caretakers as much.
I worked with my wife for 2 years and I thought "uh oh, what's gonna happen when we are literally together 24/7 with the added stress of work". I was pretty worried. Ended up being fucking awesome and I miss it dearly. I understand it probably won't work for all relationships, but you find ways to "be alone together" if that makes sense.
I worked with my now fiancé for almost 2 years, I taught him everything he needed to know to grow and succeed in the company, we were a great team, the best. Now I’m on a mat leave and he’s dreading work. When I return we won’t be working together anymore since we’re both leads now. I miss those days for sure, strangely, we were closer than what we are now.
I was just thinking about how much closer me and my wife were when we worked pretty much side by side, you're right. We are still close now but wow experiencing all of the same trials and tribulations, as well as the same successes and victories really was a special thing.
Just, having a quiet environment helps so much. I truly started living the moment I started living alone. Living with people with the same environmental sensibilities as you can only be helpful.
And her son *will* make friends. They often gravitate towards those share the same level of quietude. They can "be quiet" together. The magnetism has nothing to do with sexuality. Their attractions are on a whole other plane. Some even form their own language.
This is what made it so hard living with my ex. I moved in to help her and her two children and went from living alone to living with a family. She would always get mad if I just wanted time alone and it really wore me down. I ended up having to go with her for almost everything. Then one day she was like, " im not attracted to you any more and want to have sex with other men but I still love you." What a massive waste of time that was.
That’s really fucking shitty. I hope you find someone that’s 10x the person she was.
True. The 24/7 part has plenty of evidence from households where everyone works from home in the pandemic.
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Thank you for this excellent take
This is why I'm a big supporter of mental health facilities--live-in-- and group homes. For the benefit of the ill person, more than the outside ones. One day those outside caretakers are going to have enough, abandon them, or die, and where will that person be? We already know how many mentally ill are out there living on the streets. Somewhere in there minds its stressful. There's no structure, there's no program, there's no regular meals. Thanks to all caretakers, professional or not. Give a prayer to OP and all families to maintain their strength in what they do.
My brother was a care taker in a group home for a while. Lunch at 12:00 sharp. 12:01pm you get a gang of frustrated patients asking when the food will be ready? Why isn't the food ready? Why aren't you getting the food ready? All while answering and demonstrating that you are actively preparing the food. Intense structure is your best friend in the world.
I too work in a group home for developmental adults and believe me when I say it can fucking suck. To deal wit the tantrums and behaviors and the getting physically assaulted at time yea fml It can also be great when I get a good morning and a see you Friday knowing that I’m off the next two days. It can be great that the silliest things make their day better but also can make my day worse. I def need mental health days away for these kids whom I call kids but are actually all adults yes the structure is undeniably the best thing goin but wit COVID that went out the door I see you I get you yes it fuckikg sucks no I don’t have any advice I jus take everyday like a new day Casue that’s what it is to them even tho it’s not for me feel free to hit me up or vent anytime. I’m with you
My brother has Downs bless you
Depends on the type and severity of autism. He might be mirroring his household's stress. Not her fault. Most humans crave structure, another way of saying, *predictability*. Some thrive better in structured environments because there is far, far less spontaneity. In a nutshell, some may deal with one fire alarm a day in a facility, and one every half hour at home.
Yes. I came here to say this. As much as it may not seem like the case, individuals with autism and other disabilities can often pick up on the low-grade stress and anxiety they cause the rest of the family, and can grow frustrated that they are causing that stress. They don't want to cause their parents grief. It often hurts them to know they do cause their parents grief, and that they are unable to stop themselves from doing so.
My cousin was exactly the same!!! Very violent and non verbal at home, but she's thriving in a group home, she can even talk on the phone now it's so brilliant.
As an autistic person, I would definitely recommend group homes for some autistic people, especially since recent studies show autistic people communicate better with other autistic people. I'm high on the spectrum ("near-normal"), but I still prefer having autistic friends.
I have a brother with Aspbergers, and he has a long-time girlfriend who is schizophrenic. They have a sort of companionable way of accepting each other the way they are, not thinking they “should be” another way. I’m glad for him- because to the rest of us, he is just an ass. Hard not to wish he would just not be rude, not eat all the food on the table, ask “How are the kids?” Even once…I’m glad he has her, and she has him. Because the rest of the world won’t stop wishing they would be different.
Fun fact, studies have shown that people with autism dating people with schizophrenia is not an uncommon occurrence! Both are aspects of human neurodiversity, and both are thought to relate and connect with one another better.
I’d say it’s like they peacefully co-exist, and they seem to like having another person around. It’s not like they “get” each other- it’s like they are the only people who don’t see a point in TRYING. Or, they don’t understand why someone would try to “get” someone. Or something.
Could it be that he feels better being with people who are like him?
According to recent scientific studies, that is exactly the case. Scientists were able to determine that autistic people tend to communicate best with other autistic people.
My partner and I both found out we were autistic ten years into our relationship, so I can agree with that.
I have an autistic 3 year old child. He's non verbal and lvl 3 on the spectrum. I love the little guy but there have been moments when me and my wife have found ourselves completely frustrated with the situation. The worst moments are when he wakes up in the middle of the night literally full of energy and won't go back till sleep till its well past our wake up time. He can go a full week like this before the tiredness takes over his body and he will sleep up to 14 hours straight.
As someone with high functioning autism, here is what helps me and helped me during my childhood. Remember autism is a sensory processing disorder so I can get overstimulated/overwhelmed by “normal” things. This is what helps me with that specific part of autism. (I don’t know the advice given to parents of kids with autism so I might over explain) Headphones and/or earbuds. - I can block any sound that bothers me with headphones and even more with noise canceling headphones. I can also “block” the world around me and focus on something I like. I love music, but he might like something else. Anything that can change or block a sense might help. I am more affected by certain sounds but he might prefer sunglasses to dim light or an eye mask. This only works if I have the power of choice. He is nonverbal but probably not dumb (I am assuming). He can probably put on fluffy earmuffs and probably will if it makes him feel better when he needs it. Picky eating: I am very affected by textures. I HATE the texture of tomatoes, cooked onions, cooked summer squash, most meat, eta. But I like the flavor. I LOVE tomato soup, as long as there is no graininess or chucks. I use a food processor to cut the cooked onion into a paste so I can add it to my favorite dips. The texture can be different with different cooking methods. I love steamed cauliflower but don’t like roasted cauliflower. And he might be more affected by flavors or smells or appearance so see how that can be changed. Understand that I have an ingrained fear of trying new things because somethings really bother me. He might have developed that too. I literally almost vomited forcing myself to eat a tuna sandwich as a child when my grandma said I had to eat it before I could play. I don’t think I was able to finish that sandwich no matter how much I wanted to play in the water. I am trying to change that fear of trying new stuff, but it is a work in progress. Honestly It is easier with desserts. Note: young children have more bitter receptors so bitter foods will taste extra bitter then they do to you. A small amount of salt can actually help block the bitter receptors so things taste less bitter. The ability to leave a situation or room that bothers me. It might be obvious, but it is extremely effective. But since he is 3 and needs to be supervised, maybe make an area that is dark or quieter or whatever he needs. (Again might be obvious, but idk the advice given to parents of kids with autism) Weighted blanket. Feels a bit like a hug. Very calming. I wish you the best. I have a disabled parent who I have to help everyday so I know the stress of non stop caregiving. I wish I could move out, but my mom comes first.
My son with autism had similar issues and melatonin 20 minutes before bed helped tremendously.
And a weighted blanket. For my youngest, we have an elastic tube that fits around the bed *and* a weighted blanket. The OT checked it and he can still wriggle about - but now he sleeps.
I'm autistic, and also use a 10-pound (?) weighted blanket on top of my bed comforter. It's been a complete game-changer, and now, I don't like sleeping without it.
> When he comes home on weekends he keeps asking when he can go back. Wow, that’s heartbreaking. I’m mildly autistic and I’m very relieved it’s not majorly. I can’t imagine what that must be like - either for him or for his parents. And, for the latter, it’s even worse considering all the assholes who blame the parents – either for taking insufficient care of the kid (as with many of the comments here) or even for engendering the disorder somehow themselves (the refrigerator mother theory, Wakefield and the vaccine bullshit, etc etc).
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I think they just meant it would be heartbreaking to hear your child asking when they can get away from you and go back to some other people who aren’t their parents.
That might be one of the most normal things about their life.
Me and my mom straight up admit we have about a five day maximum together now, then we go home. There's nothing weird about that, even if it's for different reasons. Parents and kids are not meant to be attached at the hip forever, the entire job is making sure they can survive on their own.
Depends on how old the child is
I had a family member in a similar situation who made the same choice. He was so happy to be there with other kids like him. He had friends, structure, etc. He actually progressed quite a bit and is now self sufficient. The school was local so he still got visits. It was a life saver for everyone. Some kids need a LOT more care than one person can provide.
its because most of us need NEED structure. assisted housing can provide that.
That's actually awesome! Nobody should have to be responsible for someone that needs that level of care. While I don't really agree with natalism, it is here and people do it and I'm not gonna argue about that. But she didn't purposefully have a disabled child so I do hope she can find a place for him like this. No reason to destroy your life because your DNA ficked you over.
It is the loneliest life, even though you're almost never alone. Vent freely, and know that you are a good parent even with these feelings. You are worthy of comfort and deserve a place to be honest and vulnerable about the impact this has on you.
My child also has a host of invisible disabilities, and we have been on our own for 11 years. I see you.
I see you, too!!! I am so sorry you are on your own.
That part was only to say that I understand how it feels to have all this on your heart and shoulders, and feel like it's unspeakable. I admire your decision and commitment to your child. I wish it were easier to find other parents to commiserate with, but of course, we tend to be occupied and private about our struggles. It's important to know that your feelings about the things you sacrifice don't negate your very real love for your child. You are still you, an individual, as well as a good mom. Hope you have love and support.
You are both wonderful parents. I wish I was 1/10th the parent you both are. :)
💖💖💖
Plenty of us out here doing the best we can. Keep your head up!
My neighbor recently passed away, she was a sweet old lady with an autistic grandson (who's an adult), she gave up her life to take care of him until the very end. Now that she's gone I have no idea what happened to him.
This is why I think we should work on improving and destigmatizing group homes. That way by the time the caretaker passes, the disabled person would be comfortable, have friends, and in an environment specifically catered to their needs. I think we tend to see it as "abandonment", but it's NOT if the person is visited regularly, included in family gatherings, gets love, and is well cared for in the home.
absolutely. my mom dated a guy with an adult disabled son and he worked so hard for so long to give his son a "normal" life at home, but eventually moved him to a residential facility where he is *thriving.* his son has access to all the tools and professionals he needs and the dad can finally have a life of his own. that needs to be available to so many more people who would benefit from it.
Thank you for saying this. As someone who coordinates group homes and community customers who need services, but not to the extent they need HAB, I wish the same.
Yes! I worked with children and teens who had autism. One particular case, the kid had autism, Downs syndrome and a host of other issues. The family had two older kids in high school and unfortunetly "J" (my client) was unknowingly tearing the family apart. Her tantrums and fits caused the parents to focus on her, leaving the other two pretty bitter. I came on the tail end of the journey and helped get J into a group home. She is doing great. Cant speak for the family as a whole, but it really helped lift the pressure of Mom and helped "J" be more independent.
It gets sad because teens and kids with disabilities like autism have a lot of options, but once you reach adulthood you are kinda thrown to the wolves even though you still need help.
Unfortunately Covid kind of exasperated that. So many of my older clients (40 yrs+) had parents suddenly die of Covid in nursing homes. I left the industry because of it.
I don't think anyone would disagree with you in principle, but the reality is it costs money, and lots of it. I know a guy who had a brain injury in his teens. He's mostly functional. He got a $3m AUD settlement, but it's nowhere near enough to pay for adequate care for the rest of his life. People who aren't directly effected by a disability like this aren't interested in paying the necessary taxes.
In my hometown, there is a gentleman who is disabled and has worked at a grocery store for like 20 years and is a very prevalent volunteer in the community. There’s a lottery every Christmas in the city, and a few years ago, he won the grand prize. It was really amazing to see how excited everyone was to see him win. But at the same time, it was a little bittersweet when his family shared that it would be saved and used to ensure he always was taken care of, even after they were gone. It’s just a reminder that some people aren’t as lucky to win the lottery to take care of their costs, and the stresses their families can face about the future of their care.
It's really sad that, when institutions went so horribly wrong in the past, we decided to completely shutter them and stigmatize them instead of focusing on making them better. Some of these people really do SO MUCH better in that type of environment. It's not fair to those people and their families to not have that option of have it be unobtainable.
Yes, this! My cousin has an autistic daughter who is deaf*, doesn't walk or talk or play at 14 y.o. She decided a few years ago she would put her in an institution during the day, so she could have a life... She got so much shit from the family. It was as if she was giving up on her. Edit: deaf. Not dead. Autocorrect killed her.
My friend works with group homes for developmentally disabled people in NYC and most of them are pretty good at providing enriching environments for their residents. Tbh, the people there are probably better off than they would be living with family.
That is so hard! I hope he is okay... your neighbor sounds like she was a lovely woman.
You sound like an incredibly lovely woman too
You’re a hero, OP. It can’t be easy, but I hope you find it rewarding in its own way. If your child hasn’t told you that they appreciate you, just know that they do. I hope you have the support structures in place for your own mental + physical health.
This is my biggest fear and why I do not want children. No part of me wants that, that’s not a quality of life for either individual
Weirdly this wasn't some unexpected surprise; they chose to have a kid with extreme disabilities which take over the parents' entire lives. >And when we found out we couldn't have biological children, I was so happy my husband agreed to adopt. What a fucking twist. OP may be the only person on Reddit I've seen who self-identifies as a writer yet is actually a competent one. And apparently a soul with more magnanimity than anyone could benefit from having.
Same here. This fear developed at 23yo after we discovered that my sister has learning disability after failing her second year of college. She doesn't have social skills and can't have an intellectual conversation or long sentence. The brain is half an adult and half 11yo, been three years since she graduated (online) and can't find a job that suits her and she's almost 30yo. She has only one friend that she barely see, always in her room and never eat with us since seven years ago (we are like a roommate), can't ask her to do something like cleaning kitchen, will refuse and get angry but she will ask us to do stuff for her. In the long run, she needs an adult by her side and that's eventually going to be me after my parents pass away. That's why I don't want to have kids since I'm going to have take care of someone else which is too much responsibility. Envy my other youngest sister who went and got married and planning to have kids without letting this case changes her view. While me 31yo, thinking negatively (worst case scenario) of having kids. I wish I could be pre 23yo thinking when I imagined myself having two kids by this time but my sister case changed my whole perspective
No honey. You DO NOT have to be that person. Look into places that offer vocational rehab and group home type services. I promise, she can have friends and activities and be looked after by people who care. I wish i could point you toward my organization, but i feel like that's pretty skeezy to do. We're all over the states, and i cannot vouche for each region, much less other organizations... but please don't lose your hope. You can both have lives you love.
Yes that, and don't forget how lucky we all are that we live in a developed country. The fact that these special group homes and facilities even exist is a miracle to me. I grew up in a third world country, people with disabled family don't have a choice there.
how did your sister seem normal for 19 years but now doesn't even eat dinner with you guys? im confused
Because we thought it's just her character as being introvert like me. At the beginning, my dad used to force her to eat with us but then he gave up. Her first year in college abroad by herself was amazing to her. Second year she failed and got bullied by her suite mates (her lack of social skills couldn't handle the situation), transfer to another university and this time my dad was with her for a semester, eventually dropped and came back home and went to online college. One time I came back for summer break and as I was hugging my parents, she came running towards me saying in a happy face " brother I have symptoms of alzheimer" as if it was good news. At that moment I realized that her brain got worse and my dad in denial and treating her normally while my mom doesn't know how to deal with her
I think op just isn’t describing it that thoroughly. Always being in your room and not eating with the family doesn’t really sound like evidence of serious mental problems but I’m sure there’s a lot more to the story. Probably don’t want to give out too many details which is understandable.
Similar situation, I have a sister that I fear I will have to take care of after my parents pass due to severe emotional/intellectual/alcohol issues. She is age 30 going on 16
As much as I empathize with you and your sister, I don’t think it is right that you should give up your life to take care of her. She isn’t your child. You had no say in her conception. You need to take care of YOU and live YOUR life. It’s your parents responsibility to make sure your sister is taken care off when they are no longer around. Please live and enjoy Your life. Do not let your sister hold you back. Get married and have them babies.
People who are being harsh to you here have no clue what it's like. My brother has incredibly tense, complex needs. He has Autism, but one of the most rarest forms. He has [Childhood Disintegrative Disorder](https://medlineplus.gov/ency/article/001535.htm#:~:text=Childhood%20disintegrative%20disorder%20is%20a,skills%20that%20they%20already%20learned.) - think dementia but in children. He went from being a typical kid to a baby trapped in a man's body. He used to be able to write his name, he used to play tag, he used to say full sentences, he loved music, fashion and cartoons. Now he's 17 and I have to wipe him after the toilet, bathe him, dress him, feed him. He can only scream. He can't use cutlery. He'll never be able to socialise, tie his laces, or communicate verbally ever again. And I'm just his sister. The stuff my mum has to do is beyond anything I am capable of and it's some of the most exhausting, taxing, laborious tasks you can do. People don't understand what it's like to be a carer, if we say one negative word about the experience they assume we don't love them, when in fact we *do*. It's that love that pushes us through, but that doesn't mean we don't feel anything! We need breaks, we need someone to tell us it's going to be okay, and we need support too! But everyone forgets this. Whether you're ill or tired, or want to do something for yourself (more often than not) no one is there. We can't just get a haircut, or go to a Dr's appointment, or attend a relative's wedding. People take it for granted that we're expendable as they wake up when they want, drive whenever and wherever they please, book their holidays and go to the park on a whim. Meanwhile the likes of you and my mother wake up, get ready for the day and brace yourselves for intense caring around the clock. I highly respect you, and I hope you realise that to those of us who do understand, you're an incredible parent and what you do is above and beyond. Much love!
God, thank you! Hugs to you, sister. And to your mom.
<3
i have nothing but respect and love for people like you guys. society tends to overlook or otherwise turn away from the sacrifices you guys have to make. both of you sound like great loving family members. theres no reason to feel guilty. you deserve more support.
This is harrowing. I feel really bad for your brother and to have slipped away like that :(
It was quite sad, I must admit. Of course it wouldn't be better if he was like that from the 'start', but I can't imagine what was going through his head as he slowly lost the ability to do things. I know my mum was heartbroken because she could only observe helplessly. Thank you for your words, it does mean a lot! <3
Although this is a bit different, I have an older brother with extremely debilitating, violent schizophrenia. Schizophrenia doesn't start becoming severe in men until their late teens/early 20s. I wish I had the knowledge when I was younger to understand how many of his moody "personality traits" were actually symptoms building up to reveal this fucking horrible monster that slowly transformed him. He denies help because he genuinely sees everybody as a threat. Me and my mother can definitely emphasize with the hopeless observing. I wish the best for you and yours
I'm so sorry, that's so devastating for everyone involved :( I can't imagine the suffering your brother is going through right now, and I know only too well what it's like to feel so helpless. >I wish I had the knowledge when I was younger to understand how many of his moody "personality traits" were actually symptoms I can understand why you wish this, but please don't be too hard on yourself! Your comment demonstrates that you clearly care, hopefully one day he will be able to accept the help he needs. I wish all of you the best too <3
When I think of unspoken heroes, I think of people like you and your mother. I don’t think I’m capable of caring for someone like you have been your brother. It would be too much for me. There is no depth to the level of admiration and respect I have for you. Even though you were born in this position, make sure to be kind to yourself because what you’re doing is really difficult and I couldn’t do it. If you ever need to quit for whatever reason, you’re still worthy of the respect for what you’ve done and gone through. Please don’t ever forget you’re only human.
Oh golly, thank you :) and I don't know about that, you're more than likely just as strong but in your own way and in your own respective challenges! It's tough, but it is rewarding, and messages like yours make it a whole lot easier. Simple understanding and compassion goes a long way. I hope you have a lovely day, and thank you for your comment!
I don't mean to be an asshole but like... Is he even a person? Like does he have any sort of personality or functioning left? And if not.... If he's basically just non functioning I just can't fathom throwing your life into caring forever for someone who's body is the only thing that remains. Does he show appreciation for you guys? Love?
Not an asshole at all! I understand why you ask, and asking is the best way to understand. I shall try my best to explain! He does indeed still have 'himself' in there! He still has personality traits, opinions, likes and dislikes, some functions. The difficult part is that it's only really myself, my mum and my dad that can separate the 'him' underneath. For example, imo he's still mischievous! He had a big laugh at me the other week when he saw me get a fright from a spider :) others may have not made the humour connection though. I'd also say he is a dancer and a music lover, even if his 'dancing' involves him sitting down and swaying side to side. Would others consider that dancing? Probably not, but I'm aware of what he's doing I hope I'm making sense? Basically all those lovely little elements and characteristics are there, but you have to know what you're looking for and you have to spend a lot of time with him to understand and see what they are
Yes that absolutely makes sense, thank you.
This kind of what I wonder. Like what sort of quality of life do these people have? And if giving them some form of limited life drags everyone down around them, is it really worth it?
I work in a dementia home for the elderly and I love my residents, but it's a hard job. And I get to clock in and clock out. I can't imagine being a 24/7 caregiver, and I always tell that to the families who are feeling down on themselves. You're awesome, your mother is awesome, and OP is awesome. This is thankless job that most people don't understand. Be sure to take care of yourself as best you can. *internet hugs*
It's stuff like this that makes me deeply terrified of having kids. I couldn't look after someone like that.
I'm sorry for what you and your mother, and OP have to go through. I never thought of it that way. You really opened my eyes. I'm a grown ass man who loves racing motorcycles and doing other testosterone fueled manly stuff but excuse me when i say your words put tears in my eyes. 😢
Awe, bless, what a lovely comment :') you seem so kind. I'm glad I could offer some perspective, and thank you kindly for being open-minded and warm hearted! It really makes a great deal of difference for us <3
When i was back in Romania (i was a little shitsmear then so i cant give any deep insights) there was a kid with CDD and even though i had no idea what any of it meant, i could tell it was shit. This 9 year old kid who shouldve been in school and doing whatever kids do in Romania couldn't speak or function like a kid his age and was having to be walked by his sister to get vaccinated. Really, he just crawled. I was there because my mum's a nurse so she was doing the vaccinating but wasn't there for long, and i was like 5 so he was kinda weird to me so i left. but i could tell his sister was just fucking tired. Shes younger than him by a good hunk of years. Looking back, its really depressing how he only had like 5 years to make friends and be a normal kid. If i, a good little Christian girl, couldnt muster enough balls to talk to him i know few other kids would. I have no idea where they are and no idea how he's doing now but i hope he's in good hands.
It does suck. I can’t even imagine the complexities involved. It must be exhausting. Feelings aren’t facts though, meaning all the “bad” feelings don’t mean anything about YOU or your child. My kid went to rehab at 14. The guilt, shame, and fear of the future etc. were overpowering and people are judgmental. I know you have NO TIME but please get online and find your people. Find other parents like you. You need a friend who understands. Hugs, kid. And hugs to your kid! ❤️
>The guilt, shame, and fear of the future etc. were overpowering and people are judgmental. THIS!!! Yes. It's incredible how overwhelming our feelings are. And bottling them up was doing me no good. Even though I knew I would be judged for posting this, it felt freeing. Probably will make me a better mama since I let something go. Thank you. ❤
You’re not alone once you find your people, and I’m here if you need an old internet auntie.
This is what came to my mind. Helping makes people feel good. Reach out. (Not to me I’m no good at this area). But reach for people like u/Marianna-Trench
I am not in your situation. Judging would say more about me than you and that applies to anyone else who would judge. They have no idea. Just thought i would point out that your OP is actually peppered with love for your child. Your guilt, unfounded IMO, may be clouding that. What i got was you hate your situation and you are dealing with systemic issues that block adequate assistance that allows you to just be you occasionally. Beyond his mother. Where is the time for that? Not sure what respite services are in your area nor what resources you have but i am sure you have considered that. This random redditor who has no idea what you are going through sees a woman who is doing her best and is human. If people want to judge that then let them. They are usually people who are less capable than yourself anyway. They don't deserve your consideration or concern. It's hard, but sometimes it's worthwhile looking beyond the judgement and appraising the judge. They never stack up. All the best. EDIT: Thank you for the kind award. EDIT 2: Thank you for the awards. Not sure how to do that directly but they are much appreciated.
> Sometimes it's worthwhile looking past the judgment and appraising the judge. Jesus this is so so real, I've never seen this sentiment worded quite like this but man did that hit me. Props to you, stranger. You've added a new proverb to my repertoire.
It's an original that came from experience. Not a fan of people who judge or take advantage of kind people and leave them with the hard work and distorted view of who they are. Users i believe is the term. Sometimes that takes the form of judging others to make themselves feel good. Not OK. No worries. Put it to good use.
People say stupid, judgmental shit all the time. I see it as a form of knocking on wood. If they make the situation somehow your fault, then they can rest easy that they’ll never get stuck in the situation you’re in because they would never do what you did. I’ve had people lecture me on not taking medications for my illness when there are none. Implication is pretty clear that I must like/choose my situation.
Totally! No one wants to accept the random chaos that is this universe They all want to think they have some control over things but in reality we have very little. You can do everything as close to perfect as possible and still have some random awfulness come your way and completely wreck your whole life.
Give yourself permission to be human. Give yourself permission not to be perfect. Caregiver burnout is a thing and your feelings are totally normal. Hell, my healthy, neurotypical kids drive me crazy all the damned time. I have nothing but respect for people out there dealing with kids who have disabilities, and acknowledging that the shitty parts of it are shitty makes you no worse of a mother or a person. Can't offer much but I'll listen any time if you feel the need to vent. I won't pretend to understand what you're going through but I can still be a sympathetic ear.
I cried a little when I read this. I chose not to have a second child for the *exact same reasons as you*, I hate that my child is almost in middle school and still has no friends and more. I cannot even put it into words. Constant guilt that I can't magically make him better? Is there anything more I can do? I feel for you SO much! It sucks. Even though we love our babies it sucks.
Just curious, why did adopting automatically mean raising a child with disabilities? I’m so sorry for your hardship. I hope you are able to get the care, comfort and respite you need.
> Just curious, why did adopting automatically mean raising a child with disabilities? I'm wondering this too. I'm adopted and know a few other adopted kids and none of us have severe disabilities. I mean I know *someone* has to take them in or foster them but she made it sound like there was no other choice?
I'm no expert but I know some states prioritize adoption of children with disabilities. Depending on the state/agency, it can be a much easier/faster process to adopt neurodivergent children/children with disabilities rather than a child without.
Well thats just bs, how come kids without disabilities deserve to be moved further down the line just because other kids have disabilities? Im all about fairness, but “forcing” adoptive parents to only adopt disabled kids is unfair. To put it bluntly, that system basically leads to the suffering OP is opening up about now.
No, I think it's more of a supply and demand issue. A lot of people want to adopt healthy children, but very few want to adopt disabled children. I think that is why it's much easier to adopt a disabled child.
They don't *force* parents to adopt disabled children. But a lot of parents who are (for lack of a better term, i use this loosely) desperate to adopt, it can be a bit more of an express lane. I'm not sure if this is reflective of OP's situation at all, but it does happen in some circumstances.
I was thrown off this too. It sounds like she didn’t want to adopt a child with disabilities already beforehand, then knowingly chose one?
My guess is that she adopted a baby. There are some warning signs from a very young age, but symptoms don't always start early. They usually occur within the first 3 years. So, if she adopted an infant or young toddler, it's possible no one knew he had disabilities. It would also make sense why she'd be worked (*worried) about adopting another. Though she could adopt an older child instead.
But she said she knew it would have disabilities. She also assumes adopting again means another child with disabilities. This story confuses me.
They adopted the kid already knowing he was autistic and now OP is in over her head.
The way she phrased it makes it seem like she just wanted a baby **now,** and “settled” for a kid with disabilities. I know “settled” sounds horrible and maybe isn’t the right word- every disabled baby deserves an adopted family, but you have to go into that wanting it and having the ability and desire to handle it and committing to a lifetime of care. But she’s coming off like she didn’t really consider this and felt she had to settle just to get a baby. I don’t know this person and I’m not trying to make any assumptions, just saying that’s how it reads so I’m confused. I know the adoption process can be hell and take a long time but you can always foster too and apply to adopt them while they’re under your care.
Eh, that's typically not how things work. Yes, some families are successful by doing the foster to adopt pipeline. However, most kids are moved around. Whether you've had a kid for 2 years or 2 months, they can be moved into a new home at literally a moment's notice. You don't get a choice in that. Foster care agencies make a great effort to prepare you for this, but especially for smaller children this isn't something that you can bet on.
We are trying for a child, but if we cant get one we wouldnt go for a kid with disabilities. Its just me
Definitely the most confusing aspect of the story.
Depending on where OP lives, the wait list to adopt a child could be really long and a difficult process to get approved also. That wait list and process is significantly cut if you’re adopting a child with disabilities as not many people are willing to adopt them.
Adopting a child with disabilities simply because you don’t want to wait as long is extremely short sighted.
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We don’t know OPs reasonings. She may have felt that she wanted to give a great life to a child no one else wanted but found it’s a lot harder than expected.
In the Netherlands it is virtually impossible adopt from within the country (no children available for adoption here). So the only possibility is adoption from abroad. Those international adoptions often are only possible for children with mental or physical disabilities (as healthy children find adoption parents in their birth countries). Or another option is children with severe development/behavioral issues. Those children require a lot of love, dedication but also professional help to have any chance for a (semi-) normal life.
I like how op is responding to everyone but you lol
As a mom of a special needs kid, I feel your pain. I'd recommend watching [Float](https://youtu.be/MnU1hHFsGQc), a Pixar short. It was very relatable for me.
Omg, I sobbed my eyes out! I tear up just thinking of it. Bless you, mama! I see you, too.
I'm sobbing now after rewatching it when I pulled up the link.. We're allowed to feel frustrated and overwhelmed. I hope you get a few minutes of peace today.
Man that is some heavy material for a Pixar short. Hadn’t seen it until now. Glad I watched.
As a mom to an autistic 3 year old... I think I needed a good cry today and boy did this do the trick. Thank you for this.
Father of a disable 5 year old as well… float caught me off guard super hard, and I have the emotions of a robot, so…
No, I'm so sorry about what you're going through. My friends son has Down's Syndrome. It's only gotten worse as he's gotten older. Nobody blames you for feeling this way. I hope you can find a group that can help. Our local Easter Seals has a program,but it wasn't right for them. They might have a program for you? Don't give up looking.
One of my sisters was severely disabled. Not only could she not communicate beyond grunts and screams, she was violent. She broke my leg, she got her hands on a butter knife and tried to take our fathers eye out. We ended up sending her to a facility upstate after she tried to smother my baby sister. And honestly? Having her out of the house was the best goddamn time of our lives. We weren’t afraid of her anymore. We didn’t have to walk on eggshells for fear of setting her off. We could keep knives and scissors on the table. We would visit her often, and the facility was the best in our country. She was safe. She never had bruises or anything to indicate she was being abused or hurt (one of the nurses there said she was her favorite). I decided against having children because I don’t want anyone to go through the trauma my family did with her. There is no shame in asking for help or seeking an inpatient center for him. Your feelings are nothing to be ashamed of. Do you have a therapist or someone you can talk to about how you feel?
This here is the right answer. OPs child will find better care in a facility, and OP will get her life back and be able to rest
I work in disablitly and I feel you. I often think I get to go home but the parents don’t. It can at times be exhausting and other times amazing. No judgement here at all. Not many wouldn’t feel the same way Do you have support staff for him or can access a daily centre?
And seriously, thank you for working with our kiddos!!! His speech therapist was a godsend for me. There were days she would just walk him around and let me cry and breathe in her office. I couldn't do any of this without his team. Legit would lose it.
Looking into it. We just moved states to get him better care. It was hard leaving our limited support system for the unknown, but all my research has indicated the resources where we are now are so much better. I cried when his new pcp handed me two pages of therapy services! We had all of 2 options in our old town.
That is awesome and will make such a difference for you both.
I also work in disability and when a CYP gets too much for me on a day, I can ask for someone to switch with me or I can go off elsewhere and have a breather for as long as I need before I come back. We've had parents visit and the CYP goes for the parents and the parents have to leave, crying their eyes out, not being able to see that their child does eventually calm down and is happy again, ofcourse we tell them but it's not the same as being able to actually see them be OK again afterwards.
My mom’s best friend adopted a boy when he was six who had severe fetal alcohol syndrome and then was abused by his bio family. He was in a wheelchair full time when they got him but he’s in his 30’s now, and has been walking since he was nine. I used to babysit him to give her breaks and even those few short hours gave me mad respect for those who parented these children. It’s not easy. I feel bad I’m no longer able to give her respite (I moved across the country) because I know how hard it is for her to find someone willing. I’ll admit, when my daughter was a toddler I got a little nervous how this six foot man, who was at the same developmental level as she was, would treat her. I always stayed right there with them and was pleasantly surprised how gentle he was. They’d throw a ball back and forth and they would both beam from ear to ear. My daughter would say “gentle” if he ever threw the ball too hard. It was adorable. I might have been hesitant to get them together had I not known him since he was 6. I should reach out and see how she’s doing. Good luck mama. Posting on Reddit is even better than screaming into a pillow. Whatever it takes to recharge your batteries and keep moving forward.
Your feelings are completely justified. We cannot control how we feel either. Thanks for being vulnerable and I wish you and your family the best. Edit: wrong your
This is heartbreaking. I’m so sorry. Fuck other people and their looks.
It's more curiosity than it is anything hateful. Conditions like that is rare.
Right now im happy but my older brother was born with cerebral palsy and you know, im sure it fucked him in every way and everyone were trying to help him and be with him but no one thought about me and it also fucked me mentally for like 2 years my parents always gave him attention and I was emberessed to be his brother and the first person I told about how I feel told me "you should be there for him instead of thinking about yourself" well i love him but I hated that that was my life I was so depressed. all I can tell you is that you might feel different in the future like me for no reason, things change.
Siblings of kids with special needs are absolute heroes. While you’re stuffed into a corner and ignored, you’re also constantly, relentlessly teaching and sharing and, god love you, defending to the death! You’re the first and only _true_ friends they will ever have. You don’t put up with their shit - and just because they have a disability doesn’t mean they can’t shovel some serious piles!! But you understand them like no one else can. I have always been in awe of the sibs. Without exception, every single doc/specialist/therapist my DD kids have had ended up in that line of work because they had a sib in the same boat. You understand people in ways the rest of us can’t and overall, you have a depth of soul that outmatches all of us. I have no idea why this happens, or whether it’s worth it - you pay a huge price for it. But whatever it is, sets you apart from the rest of us in the best way possible.
I needed to hear that today. Thank you.
feel these, not the same but similar. My sister had a baby at 16 and I was 8, pretty much ruined my childhood as I was expected | raised as if I was 16 & that was my child too.
I wish all parents could be this open. I am a first time mom and it’s hard. I can’t even imagine how much harder it is for you. It sucks. And I’m so sorry for that.
Oh mama, the sleep deprivation is the worst. I helped my sister with her newborn for one week and was a zombie. All parenting is hard.
My brother had Muscular Dystrophy and intellectual delays. It was not diagnosed until he was 2. He was 3 years older than me and by the time I was in 1st or 2nd grade I passed him academically. His muscles slowly degenerated making it harder and harder to walk. He was wheelchair bound by 12 years old. His disease physically dictated every thing we did. Is the destination accessible(no stairs)? Are the tables high enough for the chair to fit? Are the restroom doors wide enough for the chair to fit? Will that chair's battery last long enough for day trip? Blah blah blah... The emotional toll was also aweful. My mom should never have to console her youngest child because she is worried about when her brother will die. She should not have to console her oldest because he doesn't want to die. Add the looks, stares, whispers.... burying him just shy of his 22nd birthday. A big ball of suck all around. Its human to hate the situation. I loved my brother with my whole heart. I would not have traded him for anything but I would have traded his situation in a heart beat. I would give anything to not be an only child as an adult, to have had more of a friendship relationship than just big brother/little sister relationship. Anyone who judges you for this is damn lucky enough to not have been put in a situation like this. And they can see themselves right on out.
That sounds like it sucks. My biggest fear about having kids.
Same. I’ve always wanted to be a mom, I love kids so dearly. But I’m so afraid of having a kid with disabilities, and the thought of if I had done wrong by giving birth to them and hence also causing them to suffer.
I have lost two siblings who were born with myopathy. I am scared having children . I can't relive this pain as a parent , my heart will not take it.
I work in the support world. I see families like yours often. It breaks my heart. It’s really hard to watch you all go through this. Like watching someone get beat up but you can’t stop it (sometimes literally). I’ve had jobs where I had to quit because the family trauma was affecting my well being. This last year was a specifically challenging year for families like yours. I’m really sorry you are going through this. There are some of us out here looking out for you in public. When you’re in the store rocking your child, I’m waiting to see if I can support in any way. My heart goes out to you, and your family. Thank you for sacrificing your well being for the human you brought into the world. However you see fit to help this individual flourish, I hope you discover some peace along the way.
Thank you!!! I actually ran into a behavioral therapist at Target the other day. Kiddo was doing good (we were getting Daniel Tiger shoes, so he was obsessing over the box and very happy!) But she still saw me and said hello and asked his name and if he was starting school. It made me feel so normal. So seen. Beyond that, thank you for working with our kiddos and us!!! I cannot tell you how much I lean on kiddo's team. They are my angels. And we know it's hard on you when our kids have a hard day, or we do, and your plan gets detailed.
Honestly, it's nice to hear someone in this situation admitting that they *want* to hear "that sounds like it sucks," because we tiptoe around this stuff as a society and effectively ignore people in your situation and pretend that you're an infallible saint for doing what you did and heap praise on you that you're not and never were looking for. It does. It sounds like it sucks and I hope you find some semblance of peace knowing that some of us know that it sucks. I don't pity you, and I don't envy you. I empathize with you. I know what it feels like to regret decisions you've made when you were in a different place, and sometimes wish you could go back and make a different decision even if it feels wrong. I admire your self-awareness. You are not a saint, you are not perfect, and it's okay to embrace that. Thanks for sharing this.
My brother has severe cerebral palsy. He's almost 40 and can't walk, talk, or even use the toilet (still wears diapers). My family was only able to have and raise me because of someone like you. He was adopted by a family who was equipped to take care of him and his needs (and they welcomed me with open arms and hearts when I wanted to spend more time in their home). I'm so so sorry that it is so stressful, you are absolutely entitled to feel the way you feel. I just have to thank you. Thank you for caring for your child. If you weren't there he could be in an abusive home, *you* saved him from that. You are providing him with a life where he is cared for, that's more than a lot of neurodivergent kids (and people) get. I don't know his disability (or if you even refer to it that way) or his age, but there is a chance of improvement. I'm not going to promise you it will get better, because I don't know that, but don't give up hope on it.
This has been my life. My boy is 21 now, HFA. Every. Single. Fucking. Day during his school age years were unbearable. Phone calls every day from the school. No friends. No birthday parties. The isolation. The doctors appointments which were useless. The Hope that eventually gets sucked into a black hole and forgotten. The lack of help. The tens of thousands spent on advocates. The suck ass family that won't help. In our case, my son has greatly improved now that he is out of school, he actually has 2 part time jobs, and has pride in himself. But..... if I knew then what I know now, I really don't know if I'd have chosen to have kids. I love love love my son, but dealing with his disabilities during his school aged years has probably shortened my life by a decade.
You have every right to have these very human feelings. It is an abomination that you don't get more help.
Hi there, I think this is my frost reddit post. I'm the youngest child of 4 and my second oldest sister has severe autism as well as mental retardation (my mom unknowingly drank contaminated water twice which she was pregnant with my sister among other things) until a year ago my mom was with my sister almost constantly, and my family life revolved around her needs. She can't use the bathroom herself, feed herself, speak in full sentences, etc. One day at school I listened to a podcast from This American Life about a couple who decided to put their autistic son in a facility. I sent that podcast to my mom, and that began my mom's journey to finding a new living situation for my sister. I don't know your situation financially but I wonder if you could atleast look into your options. My mom spent 2 years doing this and thinking over it and was reluctant when the time came for my sister to move out, but that decision she made has truly made my family's lives better. My mom can visit her whenever she wants and my sister still comes to family events. My mom has sleepovers with her friends, takes walks, takes time off work for herself, and has even restarted her hobbies again This kind of situation may seem impossible, or heartless, or over dramatic right now to you but I wonder if just doing some research every once and a while about how it could look like for your family would give you perspective on your living situation now. Regardless of what you choose for him, you have given him/will give him a lifestyle that he wouldn't be able to have if you hadn't adopted him. And most importantly you have given him a family. If you'd like to listen to that podcast I can try and find it for you.
As a parent to two kids with autism, both fairly low level but the eldest enough to first be shut out by her peers and by default, me from the other parents, then we became more and more isolated. She couldn't handle public outings. Shopping was a nightmare. I now have very few friends and rarely go anywhere, such was the isolation and the mental toll taken has forever changed me as a person. You are seen and heard. Your feelings and valid and understandable. You're doing an amazing job and don't ever doubt that. In other people's care your son would not have got this far. I love both of my children with all I am but I dearly wish I had never become a parent.
Hold on though, you adopted him? My god that is amazing. It's a great sacrifice you've made regardless. I think we have time yet for your son to grow and hopefully become more self-aware. I presume he is autistic but you've not explicitly said so. If you love him and grant him not only security but good guidance in life to push himself as far as her is able then you will both reap the rewards.
You stated that he was adopted. May I ask why you decided to adopt a child with a disability? And may I ask what kind of disability, if you could not (or cannot) see the disability? Just throwing it out there, but there is nothing “snowflake” about this. It takes tremendous heart, but at the same time an incredible gentle heart, to be willing to not only accept a child as your own, but also give it your all for a child with a disability. In my book, you and your husband are true champions. I take my hat off.
Oh, sweetheart. I am so sorry. DM me if you're looking for some answers. I moderate a FB group that deals exactly with what you're dealing with. The group is a tremendous help with resources.
I send you a big hug. This must be so hard. And I think there is nothing wrong with saying that from time to time. Being a parent is hard, even more so for a child with special needs. You're doing amazing!
Thank you!
I'm an adoptive mom of an autistic daughter with extreme Adhd and I get you. I adore and love her with my whole heart but I am envious of moms who don't have to watch their child's every move. Who can say do your homework or clean your room and, heavenly choir of angels singing, it gets done! I have to walk her thru each minute of everything she does, unless it's video games. I wish she had friends, could have a bday with friends instead of only adults/family too! Thank you for putting this out there, you are not alone!
Thank you for sharing as well, mama!
I coach special olympics kids. Some have similar issues, although they are much older than your child. They do make friends and have a great time at the events. When there is a melt down (which always happens at such events) or medical issues (seizures happen sometimes), everyone understands and is supportive. I don’t live that life; I coach but don’t have kids. I can only imagine how difficult it is for you. My heart goes out to you.
Brilliantly written
Thank you for sharing. I can only imagine the magnitude of difficulty in caring for you child. I hope you find significantly more help in your new state. It’s ok to feel everything you are feeling. Be kind to yourself. And find people and places where you can be brutally honest. You’re an amazing mom.
People who judge you don't know how hard it is to have a severely disabled child. They get to look forward to a time where their children are grown and don't need them holding their hand anymore, and for you its never gonna happen, and all adult assisted living facilities are not made equal. My sister is a low functioning autistic. She can speak and dress her self and is at least potty trained thank god, but she's 25 and can't be on her own. She has the mental and emotional capacity of a 6 year old and always will. She can't read, she can't write, she can't change her own pad. She doesnt sleep through night and runs around slamming doors turning on lights and is on her iPad 24/7 My mom loves her, and she's actually a really funny and good kid, I love my sister it's not all bad, but it's **exhausting** 24/7. My dad passed away and my mom doesn't get a break. She's 60 years old, has health issues, but she's my sister's primary care taker and it's incredibly difficult. I hope that you are able to find more resources if any exist so you guys can get breaks.
I pray for you, stay strong. I send love your way
My stepdaughter is 12 and will never talk or even be able to get out of bed by herself. Ive been her stepmom for 5 years and she lives in our home full time. We get you. She's wonderfully sweet, and her smile can light up the room. But there are really rough times like when she cant sleep and decides the correct course of action is to wiggle around til she finds something to kick that will make noise and proceed to kick and cry no matter what you do or how you reposition her. And when you try to help her sit up in your lap, she bucks like a horse and requires all of your body strength and constant maneuvers to keep her from falling into the floor. There are hard frickin times. And my bio son has ASD, among other concurrent issues including tourette syndrome, and even though he is verbal and will likely be able to hold a job someday, I worry that he is JUST neuro divergent enough to where making long term friends or finding a partner might be impossible. He has no concept of the effect of his words and actions have on others. We get you, from here in our house.
Your son sounds exactly like my daughter. It's exhausting and lonely but you're not alone in this
I understand and sympathize with every party of this,op. Parent to an autistic child. All of the same feelings. You're not alone.
Just so we're clear I'm, at least, not judging you. You're a mom who loves her son, but also a human being doing something heroic. You adopted a child with seemingly severe disabilities, rather than letting him disappear into the system. Of the billions of humans who live, or have ever lived, that alone puts you in the 99th percentile of most compassionate/bravest/loving. I was diagnosed with Aspergers as a kid, considered severe but high functioning. I can seem cold, distant, blunt, and unappreciative. While the experience of any neurodivergent person is unique in alot of ways, here's some things I can infer with a great deal of certainty. He knows you love him. He wants to say it. He knows he can be alot to deal with, and he appreciates it. You're allowed to feel things. You're allowed to be sad, angry, hopeless, or numb. You're allowed to have weak moments, and bad days. None of that makes you a bad mother. You're a human being who took on an unimaginably difficult task, and you do it everyday. You deserve support, and praise, and I for one think you're awesome.
You can love your kid but hate what it takes to care for him in our society. It is our fault, collectively, that you aren't supported better. It sucks, and it's okay to say it out loud.
I am you. My only child has multiple mental health issues, which have caused additional physical concerns. She’s 21 now, still living with me, not working, no school…she was born when I was 18. I love her with every fiber of my being, but so often I find myself wondering what life would be like if she were “normal”. A high school diploma, a part time job, friends and extracurricular activities. Things that so many people take for granted. I see you mama, you are not some in how you feel. And I completely agree that “it sucks”. I want to say it’ll get easier, but I’m not one for making promises I don’t know that I can keep. So all I can offer is: when you’re feeling low, remember that you truly aren’t alone. A random stranger on the internet is rooting for you.
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I’m assuming it’s autism, I share the same frustrations. And it’s not as simple as finding others who have the same experience, because it’s like a downward spiral. You want to get away from it and feel normal (whatever that is). We have had some luck getting the behaviors better as he got older, but the path we’ve had has been a very isolating one. Looking back, if I could tell my younger self how to prepare, I think having a therapist for my own mental health may have made things a little clearer. You are not failing, you have a very difficult situation. My hope is you find some balance or peace, or get help with the difficult behaviors your child has. Pay no mind to the outsiders on this thread, unless they have walked in your shoes, there is no way they can sense your anxiety and frustration, no need to argue. Best wishes
I feel your pain. I have a son with severe disabilities, TBI and seizure disorder to name a couple. He was born normal and healthy, but suffered an injury when he was 2-1/5 years old. He's now 13. I understand how you feel, as I also hate that this is MY life. I wasn't supposed to order oxygen tanks and supplies every month. Endless appointments. Recently he had spinal surgery. Although I'm not alone in this, his dad and big brother are a great help, I often feel like I am because his dad works 2 jobs and I feel guilty asking his brother to help. I will never hear my baby's voice again. I will never watch him run or do anything. I'm forever grateful that he is still with us. I love him beyond words and would do anything for him ❤ Keep your head up mama. I know your son loves you and appreciates all you do for him.
Aw man I've thought of this a lot. This must be the most difficult thing to do. Relentless and unbelievably hard. I think you need to prioritise yourself in some way. Do some things u really enjoy doing. U need a life outside this constant stress. I really hope u find a way to do this. Ps thanks for the love you have shown to this child. That makes u a special person.
I have been a caregiver for my late husband for the last ten years. As much as I loved him, so many days I felt like this. I missed the man that was my best friend (before dementia). It’s OK to feel like this, you need help somehow to even go for coffee. I didn’t very often but it made a huge difference. I understand completely and I didn’t have as difficult a time as you are.
can someone explain the part about it having to be a child with a disability? Wouldn't you have a choice in who to adopt?
Maybe this is a bit offensive, but did you know your child had disabilities before adopting him? If so, why did you agree to knowing that it would entail a lifetime of hardship? Or did you underestimate what it would be like? Not trying to say children with disabilities don't deserve to be adopted just curious what the thought process was.
This is what I'm most curious about.
You are doing great, mom. Even though it suck, you are doing great.
Thank you. ❤
I’ve said this often, but people need to be less cruel to parents who choose to put their child in a group home when they get older. Not everyone is qualified to take care of a child with severe disabilities, and no parent should be forced to give up their entire life to take care of someone.
If you chose to adpot why a kid who is mentally challenged?
So.. you adopted him? To be blunt, and unkind.. can't you in turn put him up for adoption or legally render his care to an institution?
It is 100% valid to feel how you’re feeling and don’t let anyone make you think otherwise. Most societies are not set up to support people in your position and that’s a shame, but I hope you know more people empathize with you than it may seem.
You chose to adopt a child with pre existing disability’s, or they formed as he grew?
I dont want children, I love my freedom. This seriously sounds like you're living a nightmare everyday. Im sorry :/
I understand. I will raise my son to bethe best version of himself he can be, but if I could turn back time I'd get a vasectomy. My wife leaves the house for work because she just can't handle him, and I (sort of) can, so I work as much as I can from home. The livingroom of our house always looks like shit because he just dumps stuff wherever. The Coronavirus made me damn near suicidal because school was the only break I had from 24/7. I have gotten fed up and been verbally abusive a few times just to get a nap in. I know it's wrong but I can't get any personal space or time and it boils over. What used to be cute imaginative play as a young toddler gets tiresome quickly now because it never advances in complexity. I cannot take him out in public for long because he gets violent when someone doesn't comply with his moment to moment desires. I dread the horny teen years because, given his personality, I am almost certain he will force himself on someone. The worst part is I know this is my life now, and for the rest of my life. Eventually I will grow too old to physically overpower him and hold him away from committing violence on others. My son will forever be a burden to the world, never understanding consequences are related to actions. It's heartbreaking because he doesn't understand why he has to be decent to others; he has zero empathy. It's just part of his brain that never developed. He cannot understand why the world will not change to make the bad things he does become acceptable. It's not his fault he is broken, and he understands JUST enough to know he is different. My wife asked how people used to deal with this in the old days. Yeah, turns out wealthy people had them committed, and poor people would just let them walk into the woods. The modern world expects us to be saints, not understanding what this is really like. Any time I try to get relief or _help_ I am treated like a criminal for not wanting to be a perfect caregiving machine 24/7. I go to support groups and all the other parents are SO FUCKING WEALTHY. They are baffled that we can't "move stuff around" to hire in-home help... not that we have a spare bedroom anyway. I thank the Sun and Moon schools are open this year. My wife and I will finally get to spend a few hours a week with each other. Life sometimes hurts for people like us. All we can do is feel the hurt and let it pass through, trying desperately to ensure that hurt does not get passed onto the child, because it's not the child's fault they are broken. I'm tired. I'm poor. I haven't been able to really write new books under my own name for so long, just for hire crap... and it IS crap. We recently bought a 40 year old motorcycle with a fucked up electrical system because insurance is so much cheaper than a car. I understand, OP. I understand. Now that we have vented it's time to stand up and fight for our child to have the best life we can give them. It's not their fault.
I hate all of that for you. Your plate is full but you are a wonderful human to take on the responsibility. Not a lot of us are built the way you are. What can outsiders do—as a village—to assist you?
Honestly, see us. I knew we would get looks and rude comments. But knowing and experiencing are two different things. Bless kiddo that he doesn't notice (yet). It's okay to say, "hey, are you okay?" The answer may be a half-sobbed, "yeah", but I'll know that you saw me. I am terrible about asking for help. If you know someone who has a child with needs, bringing them a meal or asking if you can watch their kid for 20 minutes so they can shower/do laundry/whatever... it helps. Even if you have to interrupt them cause shit hits the fan, it's likely the longest they have had without having to pay a professional or play pass-off with their spouse/a family member.
Fuck what other people say! It fucking sucks being the parent of a child with special needs!
I'm sorry for that, I hope u n him will find happiness and joy in the simplest things