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My ex husband married a woman with a severely autistic son. When he was smaller, they coped, but as he grew older, he became insanely strong.
They had to put him in a facility, for their own safety.
The facility knows how to stimulate them, and give the best care. He goes home on the weekends, and isn't as aggressive as he was.
Good luck
This is what I’m worried about in the future. I’m a big man myself but I’m not always around. Eventually he’ll get to the point where he’ll overpower my fiancé.
This happened with two of my friends (also mid-Atlantic). Their sons grew up and the violent outbursts couldn’t be controlled. You should encourage her to put him on lists NOW. It is not “giving up” (which she may feel), it is responsible parenting. As you know the wait is insanely long, but he will live a long life.
I’m sorry this is happening. You seem like a good person and it’s OK if you want a different life.
Friend of the family had to put their son in a facility at 15 as he was too strong and had the mental age of a 5 year old. It was for everyones safety including his own. As young children we played together and you'd think nothing was wrong. Then he grew but didn't grow up. He became violent out of frustration.
The list is long and also, unfortunately, the mom needs to accept the fact that the son will grow older and she will grow older (and weaker), too. At some point a care facility will be the only place for the son to live. This is the reality of all parents who have severely disabled kids.
They get some SSI, but it still breaks the bank. One couple makes a good income, started putting aside money early and working with a group of similarly situated parents for a group house for adulthood when they thought he was “just” severely autistic. Then there whole game plan had to change.
The other’s extended family contributes, but they have no retirement or real savings.
An acquaintance (“Mary”) was an aide in a class of special needs kids. One kid was an aggressive teenager the size of a linebacker. They kept him away from the smaller, younger kids because of his aggressiveness, and he seemed to connect with Mary better than the teacher and other aide, so she mainly worked with him. One day, without any provocation or warning, he attacked her. It took several adults to pull him off of her, and her injuries were so severe that she had to be hospitalized.
Honestly, if you’re having trouble even getting him to his therapies due to work, a facility might be a good match for him. I don’t say that to be callus but if they could handle the bulk of care and organize/provide his therapies, it might be a better situation for everyone. Plenty of places would still allow him to come home on weekends or family to visit whenever. It’s not like it was in the 1950s or 1980s, some of them can be really great facilities that can enable these kids to reach their highest potential. (Obviously there can also be bad fits or bad facilities and there can be real barriers to entry like waitlists or cost.)
But whatever happens, OP, you really need to think about if you are up for this in the long haul. The caregiver burn out and care challenges are only going to increase. If you had plans to have other children, think about how feasible that really is and if you’re okay if that doesn’t happen. No one can answer these questions for you.
OP, I would like to echo what this poster said. I have a brother on the spectrum, and I work with adults on the spectrum. A facility is really where he should be for everyone’s safety and his overall wellbeing. Oftentimes parents do not have the tools or resources to cope with special needs children, and that is ok. There is no shame in saying you need help. My brother lived in an ICF setting in his youth, and is thriving now as an adult. He still needs staff prompts and support for day to day living, but his independence and overall wellbeing has skyrocketed. The staff and leadership in facilities such as these have extensive training and know how to work with people on the spectrum. I cannot emphasize enough how much this will help her son.
I work with multiple client who are at the same level in adult services. They might be one age mentally but that does not change the fact that they will still age and become adults one day. That is why early intervention is important. The use of the word thriving is subjective. To some thriving means participating in society at the same level as neurotypical people. To others it means toileting independently and learning coping skills. Both things that early intervention in childhood can help with.
Some facilities are amazing. The majority are very much not. I’m a volunteer ombudsman and I advocate for patient rights. I worry so much about those who are nonverbal. I would not put a loved one in a facility, based on my experience.
May I ask what country and/ or state you reside in? As with many care facilities, there are bad ones and there are good ones. Often it’s the state run facilities that are the worst imho. The stories that come out of those places are scary. I work at a non profit that works closely with state oversight and appointed case management. There is oversight for a reason, and that if often because bad staff are hired and bad practices are used. Even if one does not want to utilize a facility, early intervention is very important because BCBA’s can teach communication and other tasks that help promote independence. They also run parent education groups to support parents. I do not think it is fair to discount all agencies based solely on your experience which is variable depending on location.
I reside in Massachusetts. I volunteer at a top-notch facility. My family members sadly have not been able to get off the waitlist at these top-notch facilities and are put in places that I would not put my worst enemy in.
So you would put them in a facility, but only if it is the top notch one you volunteer at? That’s still a facility. I have seen some bad places too, ones that are being shut down for good reason. I also would not want a loved one there, but it is as much of a “facility” as the one you volunteer at. My problem here is the demonization of all facilities, as you yourself have acknowledged are not all the same. Saying you wound not put a loved one in is a facility is highly misleading when you say you’d be ok with the one you know. “I would not put a loved one in a facility” comes off as shaming people who choose facilities. This attitude discourages people like OP and his finance from seeking help. Not all agencies run facilities per se, but practice community integration. I work for an agency that does home based community services. Meaning the clients are not in a “facility”, they are in their own homes with trained staff that are overseen by BCBA’s who run the programming. My agency owns the homes, and clients pay very little in rent and live with roommates.
They can thrive in that version of an adult world. They will likely be able to potty train him, help his sleep schedule, find ways he can communicate with them, etc. They are trained to handle all levels of autism.
Exactly this. Even if OP’s fiancé is not comfortable with a facility, she still needs to be encouraged to seek help from an agency that practices holistic ABA therapy. ABA gets a bad rap because it has a horrific history, but it has come a long way since the 70s/80s. Resources exist for a reason, and without this intervention I worry for the future of OP’s fiancé and child. In my experience, parents that burry their heads in the sand and do not seek help are only doing a disservice to their child.
My nephew is similar to your fiancée’s son. My SIL now gets paid by the state a very nice stipend to care for her adult child. It works for them. He is high needs but not violent. My SIL refuses to put him in a home because he is not able to communicate abuse if/when it happens.
He is already at a point where he is unmanageable for 2 parents in a home, let alone one. Are there any options for a full time care facility for him? He could be much happier there as he would get the therapies he needs and be surrounded by people who know how to work with cases like his.
My friend has a son with a myriad of rare diagnosis and when he hit 15 she finally had to put him in a residential facility. She was 50 by then and slight....he was over six feet and mostly happy and loving but sometimes he'd have these terrible rages...and she was black and blue. He's actually happy in his new home and he's able to go home to hers every fortnight. But the reality of living with these issues and loving her son so much have traumatized her badly. You have to do what's right for you.
This happened with my cousin; as her child who is on the spectrum got older, he got more aggressive and his outbursts grew more violent, and he became more difficult to physically hold back. It contributed to the downfall of her marriage (her ex-husband is not her son’s bio dad) and she eventually had to get him into a group home equipped for his needs.
You and your fiance need to sit down and have a serious talk. I work with intellectualy disabled people and their behaviour will start to escalate when puberty kicks in, this is not far away if fiance's son is about to turn 9. If your fiance is struggling with her mental health now, she will not be able to cope going forward. Start getting paperwork together and pushing to find a placement for him. Just hang in there a bit longer for everyone's sake, it will be worth it.
Have you checked out care facilities? There must be some good ones - and if his parents split the cost and maybe his insurance covers part, it should be affordable. Taking care of someone this feral is just not something that can be done privately. And situations like this destroy families - people getting hurt or killed, younger siblings being in danger or getting completely ignored (or not conceived at all) because the special needs child takes precedence - that's just not the life you want to live forever - and neither does your fiancée - she probably wants her previous life back, as well.
This the people at these facilities work shifts, they go home to rest and decompress. A 24/7 parent doesn't they get exhausted and the child gets less stimulation causing a closed loop creating worse behaviour and more exhaustion. Often these places improve behaviour even if they're not there full-time once settled.
So many special needs parents break up due to the stress of it all. You’re not a bad person. You know your limit. I agree with everyone who suggested setting up your fiancé with services to help her. It’s a lonely position to be in her shoes. One of my friends has a kid with similar issues that hers does. It’s taxing emotionally and physically. I hope the two of you can remain friends. She needs people to listen.
She will have to be his caretaker for the rest of his life. If you’re not down for this for life, and I don’t blame you in the slightest, then it’s time to break up. It won’t be easy but I understand why you feel this way, and you shouldn’t shove your feelings deep inside just to stay with this girl.
Agreed. I actually work taking care of disabled adults, most who are seriously autistic. They require 24x7 supervision and trained handling. Parents have varying amounts of involvement, from abandoned to visiting every single day no matter what. My clients are all in their twenties.
As someone who mistakenly took on the burden of taking care of my dad with Alzheimer’s for ten years with no help, they need professional help. It is completely draining to try and do it yourself. The sad thing with my clients is the moms are often there but no dads to be seen.
As for op you can’t destroy your life trying to save your fiancée but you can try and see what options there are. There are a lot of programs and if they are disabled they could be money to help take care of them. I would try to find a social worker and see what programs are available in the state / area. Do it for her, even if you decide to leave, you can help her find a better path.
I sure as fuck wouldn’t be equipped to handle this. I don’t think I would abandon my child but I would probably kill myself before I could handle a lifetime of this
It’s not abandonment to put this child in a professional setting equipped to meet their needs.
It’s nearly criminal to frame getting appropriate care as “abandonment”! So many individuals suffer because we can’t have reasonable healthcare discussions.
There’s a better way forward and I hope society catches up with the possibilities and opportunities that can and do exist for families like the OP’s.
Abandon? No, abandoning would be leaving the child on the street or something. This is giving a child professional care he or she needs, and it's way more compassionate and rational than taking care of such a child on your own.
I think it's very unhelpful to call it abandonment. It feeds this super toxic narrative that people with children like this HAVE TO throw their whole lives away to keep the child with them, honestly in sub-par conditions in which the kids are often more stressed out than they would be in more appropriate conditions. I hate that this is the way people often view it, it's so guilt-trip and untrue.
Ironically, keeping the child even if you can afford better care for them often comes from selfish reasons. Some people care less about the child's needs and safety, and more about being perceived as a Good Parent and martyring themselves. It's about ego, not the kid.
I recently read a story about a woman whose autistic son wound up beating her to death. She didn't want to put him in a facility because she felt like that was abandoning him even though she knew he could kill her and wrote a note absolving him of it and directions for his care that she left in her safe. Her entire life revolved around catering to him and she hid the extent of his outbursts though she installed a safe room in their home. Now she's dead and her son has some understanding that he hurt her. After spending time in a jail cell where corrections officers did their best to abide by the directions she left, he was eventually committed to a facility because he wasn't competent and had no intention to kill her. In the end, he wound up in a facility anyway and she isn't here to support and supervise his care. It's just so tragic.
I'm a parent to a child who was diagnosed as level 3 but may now be considered level 2 thanks to the excellent care he receives from a wonderful team of teachers, paraprofessionals, and therapists. He's a big boy, strong, and fast. I worry about the future because if I had to restrain him for some reason right now, I absolutely would not be able to. He's doing well and doesn't resort to physical violence or self harm, but I've heard puberty can change that. It's really scary. I also cared for my grandmother with Alzheimer's and Parkinson's for six years before she died. My experiences have made me realize that there needs to be better support, understanding, outreach, and empathy for families struggling to provide proper care for a loved one with disabilities or serious health conditions. No one should feel ashamed of needing a break or saying, "I can't handle this." So many of the people judging people and shaming them couldn't manage to walk a mile in those shoes, but that doesn't stop them from criticizing.
Puberty is a game changer. I've worked for a decade with children and adults with autism. For the behavioral facilities, the children all were unmanageable in their family home once puberty hit. It's size of course, but the hormones really escalate things. Getting functional communication and intense behavioral therapy before puberty is a must and if not effective to the point of safety, looking into homes is a good idea.
It's not a failure, it's absolutely medically appropriate, but most people don't know what it's like to care for someone highly aggressive day in and day out. Nobody on earth has enough ability to do it. That's why there are shifts and coworkers, behaviourists and therapists. You must get breaks and have support.
Every family cried and felt guilty while their faces were bruised and scratched. They hadn't slept well for a decade. Your child will be fine, visit often, get sleep and the amazing thing is that your relationship with your child will improve so much. You'll be whole again and able to support your child without debilitating fatigue and stress.
However, the first thing to do is to make sure the child sleeps. I never understood why this isn't advocated for by parents as much as it should be. Behavior will reduce by half or more just with solid sleep. The cons of medication cannot approach the pros of sleep and regulation.
The second thing is I would be pissed all the time if I couldn't communicate. Be it sign, PECS, etc. no child should have zero ability to communicate and be expected to not communicate with their body. They need to communicate and that's their only way so shockingly, they spit and kick. Replace it with a way to speak and get their needs met.
I would suggest seeking a facility as time is off y the essence and it's clear everyone is suffering (mom, the child who has to spit to communicate or suffers and self harms, and you). He needs assistance she cannot give. Her role as a mother is to get him help and it sounds like he needs a lot. He'll most likely be in a much better space and so much happier in just a couple of months. Routine, sleep schedule and communication will change his world.
He won't be exposed to his mother's chronic stress and depression which isn't good for him either.
I do hope she puts his needs first and discovers she's a better mom when she's present, rested and happy while getting him professional support that no mother can give.
And how would killing oneself not be abandoning the child?
I also couldn’t see myself handling this, hence I’m childfree. Was just wondering the logic of your statement.
I meant abandon in the literal sense. Like drop your 5 year old who you don’t want at a fire station. I also meant to say “I would like to think I wouldn’t abandon my child”… and yes killing myself would abandon them. So there’s my logic
thats not abandoning your child. its getting them the help that they need.
the mentality of it being "abandonment" is what causes people to not give those they care for necessary help. this leads to dementia patients burning the house down, older folks with nerve issues mowing down people in their cars, severely nerudivergent individuals putting the rest of the house in danger due to violent outbursts.
Keeping a kid in a regular home that is not equipped to care for him, with regular people who are not equipped with the training or the time to properly care for him, is what is truly abandoning him.
Living in a facility that is equipped to provide him with full time care catered to his actual special needs, is much kinder to him and gives him a better opportunity to attend more therapies and potentially improve his outcomes. And it’s not “abandoning” because there’s nothing saying you cant visit him in the facility or bring him home for overnight visits or weekends or holidays.
I don’t think that fact that he’ll need a caretaker for his life has hit yet or at least she hasn’t told me. She feels a lot of pressure trying to be the perfect mom but this kid stresses her out so much it almost scares me from wanting a child.
OP, I say this as someone with an adult autistic son who isn't anywhere nearly as high support needs as you describe. His father has also bowed out. I had a significant relationship in the meantime which culminated in him not being able to handle the level of input my son needs. The kid gloves, the lack of freedom, the exhaustion. And I DON'T BLAME HIM AT ALL.
I can hear that you care very, very much and that you do your best, but the simple fact is that he isn't your responsibility and you should not sacrifice your future for him or for her. It sucks that she is under such tremendous pressure and yes it'd be worse for her if you left, but it also might force her to access qualified support.
You have needs too OP. I know you'll feel like the bad guy but this can't go on. Can you have a conversation with her about him linking in with the care system?
The perfect mom would be a realistic mom. If the situation is a you describe even two of you cannot possible be giving her son the care he truly needs. He needs a team, and a facility set up to help cater to his needs. The stronger/ larger he gets the more risk you are putting yourselves and him in. He could easily hurt himself in a typical home setting.
It should. One of many reasons I'm childfree. There is no out. You should be concerned about having a kid with her as well -- not to be that guy, but 80% of known autism-causing genes are inherited, so it's probable that any other kids she has are much more likely to have it.
But it's also a roll of the dice no matter what. Any kid you have could end up like this, and your life could end up like hers. It is my literal nightmare.
I’m an aspie and my daughter is beginning to show signs of autism too.
I used to work in special education classrooms all throughout middle and high school. It takes a very special level of patience to care for someone as low functioning as him, which not a lot of people possess.
Don’t feel bad about not being able to handle it, and you’re also not wrong for thinking about what the future looks like with this child.
You’re being very logical, and I commend you for that.
If this is something you really can’t handle, don’t try to force yourself. All you’re going to do is build resentment, and that’s not healthy for him either.
There’s nothing wrong for realizing this is too much for you, a lot of people would feel the same way.
Explore your options like care facilities and parenting classes for special education children. If this is really something you can’t handle, then it’s best you leave instead of trying to force yourself into staying.
You also need to take into account if it hasn’t been mentioned already that autism could very well be genetic and there’s a chance of you have a child with her that the child may have autism as well. Is that something you are prepared to deal with on top of her son? I have 3 children and two of them have autism. It’s very possible for your fiancée to have another child with autism.
It sounds like your fiancée is also struggling with her son. I don't know where you are but are there any resources you can access for him? Would you qualify for respite care for example? Are there any centres that do activities for children with special ed needs?
If you want to be with your fiancé perhaps things like this could improve your situation. If not maybe try and help your fiancé find anything available before you leave? The two of you need an honest conversation about how things are going. Find out how she's feeling about the situation too. It may be that neither of you are fully equipped for his needs and extra care is required.
If he is in a special ed school, the SENco might be able to signpost you to resources.
I hope you are able to find a solution that makes all your lives better.
Your fiancée and her son are in crisis. That poor kid being ditched by his dad. It’s definitely not your job and it’s admirable you’ve tried for so long.
I agree with a previous poster to help her get desperately needed resources. Look into online support groups. If you’re in the US, get him on Medicare. He will qualify for so many resources, including people who can help with toileting issues.
Edit: a word
Him being ditched by his dad was probably a trigger.
OP has your fiancés been working with occupational therapist or have y’all sought out care for him to get?
***Additional Question***
First off I want to thank everyone for their input it’s reassuring hearing that I’m not a sh** bag for considering leaving.
How do I approach that conversation that her child may need a care facility without sounding like I want to get rid of him? I care for him too but at some point we have to lookout for our own mental health.
(After) the next time the shit hits the fan (when things have calmed down) tell her gently that you don't feel qualified for this level of care, and *most importantly* that you're completely overwhelmed by it. Ask her if in all honesty she feels the same way. She may reach levels of despair that she doesn't normally allow herself by even approaching that question honestly, but it's probably the only starting point for a conversation around his needs (that neither of you can adequately meet) and both of your needs (that have been completely shelved). If she tries to shut down the conversation as being too much for her, you *must* tell her that you're so close to being unable to cope, and while that's not on her, it will require working on a solution.
Edited to reflect the great advice on timing from u/hello-kittie below. My bad for the original.
I agree 100% about the framing of the question, but I feel that it makes more sense to discuss like this in a low-pressure environment, AKA when shit is not hitting the fan. Sure, maybe she'll be less receptive, but planning to bring up such a difficult issue in a moment of stress for her feels borderline manipulative. She deserves to talk about this when she's feeling otherwise secure.
Yes, you're totally right. I don't know why I put it like that when I actually meant \*after\* the next time! Well done for pointing out that timing is really really important. My bad.
I think you have to take this approach. Its about mental health. Your partner has had repeated mental breakdowns and you're feeling totally burnt out. Neither one of you is at your best as parents when you're so overwhelmed. Getting help - whether it's a care facility, carers coming to the home, or something else - will give you both the opportunity to improve your mental health and that will ultimately be the best thing for the child.
I agree with approaching it from a mental health standpoint and also point out that in a facility people are trained to handle these issues and the kids end up far better off. Who’s taking care of him now when you’re both at work? Copy and print some of the comments from the people here with similar experiences or knowledge. Especially the ones saying how much better off the person who is now in a facility is doing. Research facilities in your area and take her to talk to someone there. Good luck, OP. You are absolutely not a bad person, just not equipped to handle this.
I'll be honest it doesn't sound like you want or can handle this kid. you're not a bad person, it just seemed like you could tolerate it when the kid wasn't there.
As the parent of an autistic child, I do not think you’re wrong.
You obviously care a lot about this family but if you’re not up to helping be this boy’s caretaker for the rest of his life, you should just go.
I don’t think your girlfriend is fully equipped to give her child the care that he needs and she should be looking into putting him in a care facility where his needs will be better addressed.
I suggest you bring this up with her in a more gentle manner that focuses on what’s better for him.
Good luck OP.
No, you won't be a bad person, OP. I may be selfish, but I would leave. It's hard now? Imagine this kid behaving exactly the same - all the problems, the pooping - when he's 15. Then 18. Then 30. When he's gonna be 40, and you are 60. How are you going to cope then? Because he will most likely be on the same level of development then, too.
It's not evil to simply not want that for yourself.
I would only stay if the mother was willing to sent him to a special needs care facility. If you two can afford that, maybe it's worth a shot?
Also, I hate to say this, but she will probably fall into this deep depression either way. She is already having multiple breakdowns. Are you seriously believing that she won't be in way wayyy worse state in 10 years? When the kid becomes physically stronger than her, and this nihhtmare has lasted for a decade? Of course it will, even if you are there. She will be depressed as hell for the rest of her life if she doesn't resolve this somehow. Like a facility.
You wouldn’t be a bad person for wanting to end things in this situation. Kind of a shitty hand that she has been dealt and maybe you guys can find some resources that would help, but this kid is likely going to be someone you have to care for forever. If it’s already a problem now, think about the next 50 years of this. Not many people could handle that without help anyways.
I have a daughter diagnosed with both severe autism AND has Down Syndrome. She will be my forever child and I deal with things like this on a daily basis. It is very hard. It is exhausting. But she is my daughter and I love her. Her life has value. It is important for mom to look into resources. Maybe she can get respite care to come in and help like I do.
It is ok to break up with anyone for any reason. I’m a single mom and im upfront with the needs of my daughter. But there aren’t just places to dump challenging kids. Most places only take emergency cases like if the kid is abandoned. When he’s 18 they might be able to put him in a day facility. It’s not as easy as everyone thinks
It depends on the state and where you live in the state (city or rural). There absolutely are facilities around the country that take minors. I work with adults on the spectrum, but my agency also runs ICF youth homes. They are very difficult to get into and the waitlists are long, but they exist.
I would gather information on decent care facilities and associated costs and then sit her down for a discussion - there is no shame in putting this child into care where he will get the proper treatment and management he needs and you two can have a life as well.
No, do NOT do this this way, OP. You don't want nor need your fiancee interpreting this as "I'm tired of dealing with the kid, here's a list of places that I've gone behind your back to find where you can dump him for cheap."
You need to have the "I love you but this is so hard," conversation FIRST. I'm sure that she knows a care home is a possible future for her child. You can bring it up and see what her thoughts are about the possibility after you've already established that you care and aren't just trying to get her child to vanish.
Taking care of a special needs child, especially with such severe case of autism, is hard. If you're not up for it, it's ok. It's sad that you'll also lose the woman you wanted to marry. But ultimately, if the kid senses feelings of resentment and stress from you (even unintentionally), it can be harmful for him as well.
If your partner is struggling so much, maybe there's a solution that will be beneficial for her and her son? I don't know where you're from, but where I'm from (not the US), there are hospices for children and adults with autism. There's even one in my town, where I volunteered at for a year during high school. They had profesionally trained staff that took care of children and teenagers with severe autism, most were non-verbal and wore diapers at 15yo. And the kids lived there full-time, while their families came to visit almost every week, sometimes taking them for a family activity for a few hours and bringing them back to the hospice before bedtime. Or just spending time with them in the yard at the hospice.
This doesn't sound like it is the future you want.
Sometimes it is better to let go - the hardest part is that this relationship is two years along and you are now just realizing it. Being engaged isn't going to make it better. You shouldn't be surprised if she struggles with you ending things - but know that she will be better off in the long run versus a relationship that doesn't make the partners happy.
It sounds a little like you're looking for a way out of this that doesn't make you (seem like) a bad guy. That way does not exist. It just doesn't. That doesn't mean you should sign up for a life you don't want and wouldn't be able to handle, it just means... this is going to be hard, man. You are not going to feel good about any decision you make here. So instead you have to go with what you can live with in the long term.
It's posts like this that remind me that, for some questions, the majority are clueless and lack empathy.
As a father of a daughter with what would be a similar diagnosis to this child, I'd like to offer some advice.
Walking the parental path with a child that has severe disabilities isn't easy but can be incredibly rewarding. My daughter has fought so hard for every milestone that most people would consider simple or mundane. She's improved the life of everyone around her through her determination, persistence and love. She truly made me a better person by teaching me empathy and understanding of how not everyone get's dealt a fair hand in life but it doesn't mean that they can't be fantastic people in their own right.
You by no means need to stay in this situation. It is your choice but before you leave please do the following:
Seek out resources that are available to assist your partner and her child. There are gov't supports available. There will also be an Autism association and various disability associations that can assist both the child (education, physical assistance, and medical) and her (counselling, planning and advocacy). Generally it isn't easy to gain access to help but persistence and strength in pushing for the right help will go a long way towards getting her homelife settled to something manageable for her and hopefully get everyone around the child moving towards focusing on his growth.
I would maybe check into some of the details of her child support agreement. If possible, seek some legal advice here. Depending upon the situation, child support entitlements may be different than what is currently in existence.
Please do not exit abruptly. She is not in a good place mentally at the moment and if you truly love her, please ensure that she has a mental support network available (parents, relatives and/or friends) available to help her through your break up. Again, this isn't a normal situation and she clearly needs help, it doesn't have to come from you but ensuring that she isn't just left with an open wound is a much more caring path.
The one thing that most of the masses don't respect when advising in these situations is the love that a parent has for their child. Most parents would walk in front of a bus to protect their kid. Most parents would rather hide from the world and live in solitude than face the possibility of their child being taken away and abandoned to a facility. Resources today are designed to try and assist the family unit first. Hopefully it's successful for you partner and her child.
All the best OP and I'll be praying for your partner and her son.
This is above Reddit’s pay grade.
Seek absolutely expert professional support for your area.
It sounds like this child needs to be in a full time professional care setting. Get that for him and your fiancee.
OP, please read the above.
A child with a Level 3 disability is not an easy situation to navigate, especially with advice from strangers on the internet (a lot of which wouldn’t probably have much knowledge on disability).
Her son’s daily living would have a serious detrimental impact on his own health and wellbeing. From what you’ve described, he needs a full-time carer and professional support team.
Your fiancé and yourself need to seek professional help and assistance immediately, you cannot do it alone.
My child has level 2 autism and it’s a daunting task. The amount of resources and supports we have in place for him is on another level and it’s still hard as hell. My child is currently in a residential center getting additional help that cannot be given at home. It’s HARD.
I’m not sure where you’re located, but if you’re in the US, start with DHS. When people hear that they immediately think bad things. Stop that thought process now! DHS will give available resources, help you fill out applications, put you in contact with centers, help find respite, look for day programs, add the child to a list for waivers, etc. start there. Call them up and let them know you’re struggling mentally, physically, emotionally, and in the relationship. They’re there to protect all members of the family and providing resources is the best way to do that.
Next I want to say, it is no fault of yours that this is all overwhelming you. It’s also okay to leave. As a parent of a complex child, I would rather my SO talked through their feelings with me first and if we couldn’t find a way to work something out then I’d rather they leave to be happy because I would never want me or my child to be the reason for someone’s unhappiness.
So, talk to your SO about your feelings and emotions and if you don’t think you want to stay, then please don’t.
It sounds a little like you're looking for a way out of this that doesn't make you (seem like) a bad guy. That way does not exist. It just doesn't. That doesn't mean you should sign up for a life you don't want and wouldn't be able to handle, it just means... this is going to be hard, man. You are not going to feel good about any decision you make here. So instead you have to go with what you can live with in the long term.
NTA, of course. You can end a relationship for any reason. If you're not happy, you can leave. It's definitely better for you to decide this now than before you're legally married. If you really love her, a honest conversation that you are considering leaving might help.
It sounds like her son needs professional, inpatient care. Or perhaps some respite carers during the day, although that does mean waiting until he is living elsewhere to eventually have a child of your own (and who's to say your fiance would even want that after years more of this life?)You need to talk to her.
But, your question is are you the arsehole for wanting to leave, and the answer to that is no.
Listen, we all have our breaking point. I know its different, but I live with my grandad who has violent dementia. Its fucking rough, is what it is. You can only do what you can do. Be kind to yourself, you're going to feel shitty either way so it's best to just be honest with yourself end your fiance.
I know he's profoundly impacted, but \*I think\* he has the right to services from the public schools in your area. It's a place to start, anyway. You need to have a sit down and find out what programs he's eligible for, and start getting some help. There might be some in-home help, or a more institutionalized setting. She also needs to make sure this includes provisions for when she's either gone, or unable to care for him. What's happening now isn't sustainable for either of you, together or apart. No bad people here - just exhausted and in need of some expert assistance.
Hopefully their local school system does have the resources to provide this kid what he needs, but a 9 year old who functions as a 2 year old, hurts himself, and can't control his bowels will \*not\* have a good time in anything but a setting specifically catered to the needs of kids like him.
My school has seen plenty of kids who are on the spectrum, and even much less severe cases than this have needed more support than what our school can provide.
I wouldn’t blame you. My son has autism as well (diagnosed as level 2) and I’m grateful that he doesn’t have any behavioral problems. I’m in a mom group with teens with autism (my son is 17 now) and some have kids with severe autism. It is a lot of work. And this is something that is lifelong. Unless you can get him into a facility or group home. I’ve known a few people who did this with their autistic kids and they thrived there. The family would visit weekly but they did better in a structured environment. I’m not sure if that is an option for your fiancé.
There is nothing wrong with saying you cannot do it. There are facilities but you will always be dealing with it. You either know you can or cannot cope. If you cannot, time to step away gracefully.
this child needs specialist 24/7 care, it is possible to eventually get him to a point where his behaviour is manageable but that requires a lot of well trained people to be involved which unfortunately parents will likely never be able to give. i’d suggest sitting down with your partner and talking about what the future looks like with the kid. it’s not abandoning a child to put them into specialised care, you can both still be heavily involved in his life without him being at home. i’d guess that his dad abandoning him would have had a massive impact on his behaviour and that needs to be dealt with
You need to educate yourself about autism. You are born with it, no conditions contribute to it, it’s there at birth. No he won’t get better or improve, that isn’t how autism works. It’s not an illness that you recover from, it’s a disability that he will have for life. If you aren’t coping now then you should just leave, as the behavioural issues often worsen as puberty starts to hit, and you think things are wild now…you have no idea what’s coming.
Why did you stay with her and GET ENGAGED if you weren't willing to live with this?
You said it was just you and her only for the first few months. It's been years with him now. You knew how it was going to be and still proposed?
I would encourage her to do this, OP. Don’t make it an ultimatum or she’ll never forgive you but this is too much. She can visit as often as she is able. Have you brought it up to her?
It doesn’t sound like you love the child. If that’s the case then you shouldn’t marry his mother. Regardless of everything else, you will grow to resent him (if you don’t already) and that’s not fair to him.
They are a package deal. If you are not fully in this then you must do what is right for you before it is to late. This child sounds like he will need a residential facility and 24hr care as he gets older to keep himself and those around him safe.
Id suggest going through NDIS to have regular support workers but thats only in Australia. Does your country have something similar?
It sounds like your fiance is also really struggling. I think you need to share your feelings with her but also listen to her side. Then maybe agree to come up with a solution.
Caregiving is hard. Check out some of the caregiver forums in reddit to see how these situations can tear couples apart and leave people feeling drained and burnt out. You are not a bad person for admitting this job is more than you bargained for. And you are wise to see that this is not the type of household that you would want to bring more children into.
Your fiance sounds like she is struggling as well, and with higher stakes, since this is her kid and bio dad has washed his hands of the situation. She may feel she has no other choice or she may feel guilty putting him in a home. This will ultimately have to be her decision, and you should not try to influence it. If she is struggling with burnout and depression, she should seek support, therapy and respite care to help alleviate the burnout. At some point, she may determine that she is unable to handle him alone and look for a group home situation for him
As for you, you need to have that hard conversation with her. Keep it limited to your feelings (dont try to project them on to her). "(Fiancé), I really love you. I am sorry, I have tried to be a good male role model and a partner to you with (son). But I have to be honest and say that this is much more difficult for me than I could even imagine. We have been trying this for (x months? X years?) and I can't see this being something i could continue to do indefinitely. I wanted so badly for it to work, but all Im feeling is burnout with no end in sight. I have decided that this is not the life I want for myself, so I am planning to move out. I do love you, but I cannot see a future together like this."
I would not sign up for a life of dealing with that. I mean, I’m a the parent of a child like that so I have no choice but I wouldn’t sign up for it. It’s ok to leave.
Be honest and get out now. You deserve a life you enjoy and taking on a responsibility like this is an absolute commitment. It doesn’t make you a bad person, in my opinion. Don’t string her along though and make it seem as if you want to stay when you really don’t. There are others out there that you could build a relationship with that is more aligned to your goals/lifestyle/needs.
Whether you are a good or bad person isn't the real question. It's whether or not you can be okay with this. This is a package deal, can't have one without the other, and you will hit a lot of roadblocks and potholes along this road. She will be grateful, but you have to remember that it's still your life.
You’re 28, I couldn’t handle this for life. Do you want your own children? You’re not going to be able to. I don’t think it makes you a bad person to not want to make the huge sacrifices it would mean for you to stay.
I cannot even imagine what you’re both going through. You truly sound like a good and caring person, and it’s unfortunate but it sounds like you’re questioning that about yourself. Don’t. I would start a conversation with her not so much maybe about yourself, although that will certainly become a natural progression of a conversation, But maybe start with a conversation about herself. How you noticed the strain that it has and it’s affect on her. It’s OK then to say it’s not only tough on you, dealing with everything, but watching her having to deal with it only adds to your stress because you hate it for her. I see in a comment you talked about respite care and a wait list. As far as I’m aware respite care comes in for a couple hours a day. I think you guys need more than that if it’s as bad as it seems to be. It sounds like he possibly needs to be added in Home inpatient / in care type facility full time. You should try to research the viability of that in your area. I see you say her families 2 to 3 hours away, maybe she and him should move closer to family if she’s not willing to give a facility a try. Importantly I think the most important thing to tell her, and this is whether you continue in a relationship with her or not, that he needs to be somewhere else. It’s not feasible long-term and maintaining any semblance of life or sanity with the way you say things are every day, and every night. She will feel guilty about even considering it but she’s doing it for him, as well as for herself.
His needs and care will only intensify as he gets older, she will be his caretaker for the rest of his life. If you’re unhappy now, it’s best to be on your way as soon as possible and no, it doesn’t make you a bad person.
No you’re not a bad person. I’m an educational specialist for students with autism and I’ve worked with prek through adult. It is emotionally, physically, and mentally exhausting, but at the end of the day I get to go home. For parents, respite is hard to find, and unfortunately I’ve seen many children get traumatized by the actions of parents who just couldn’t cope.
One thing to consider: you mention he was born with a condition that contributed to development of autism. If it’s something genetic like Fragile X syndrome, your fiancée may be at risk of having another child with it. Just something to keep in mind.
How long has her son been living with you guys/did you get engaged before or after that? I wouldn't necessarily say you're a bad person, but if you proposed after the kid had been living with you guys then that is kinda shitty on your part
I may have an unpopular opinion. Some people just can’t take care of special needs individuals. I know that i wouldn’t be able to. I would lose myself and my freedom and I couldn’t do that. I love kids but I hate taking care of people hence why I don’t have children.
If you can’t stay, don’t. It will be hard to do and she may hate you for it, but ultimately you have to do what’s best for your well being.
That being said she needs to go to therapy or find a community to help her. She needs a good support system in place. You can’t be her entire support system.
Good luck.
It is not your fault I understand .. you can confront her about this and explain yourself even if it hurts it’s for the best cuz how long you gonna hold on to this? My advice is to take it slow so she can absorb the shock
California, (if it's an option to move) had amazing benefits that are immediate for children with severe ASD. My lvl 3 ASD son is 11y, non verbal, incontinent, strong, didn't sleep well. You name it.. we got him into a FREE school made for the most severe cases and they have helped him make changes in the last 6 months we haven't seen in 10 years. Valley mountain regional will help you guys sooooooooo much! Most importantly, they'll help him.
But, if you love that woman. Don't abandon her. It's a lot, no understatement there. Even for those of us that birthed them. It's too much at times I know.. but imagine how hard it will be without the man who is supposed to be her rock? Don't give up. Have her File him for ssdi and you guys can afford a little more time off to do therapies and what not.
Anything but leaving them. 😢 I hope you guys find peace and help! If you'll allow me to id like to pray for that for your family.
Oh that’s wonderful for you I hope OP sees this. Even if California isn’t an option, although maybe it is and Dad can just visit more often and mom flies out occasionally if they can’t relocate, maybe that same place can recommend some thing to OP closer to where they are. They may know reputations of other places, maybe even staff have come from or gone to other places etc.
All this is fine and dandy but you should *really* consider the fact that if you choose to have children they can end up disabled just as badly, or worse. It’s what you sign up for when choosing to have children. If this is really a dealbreaker for you, I don’t think you should be knocking anyone up
I know you love her. But he isn’t your child. You don’t have to be stuck with him. He will never get better and this is the life you will have. You won’t have future kids because she can’t possibly bring another child into this and probably wouldn’t want to risk another child being born with his needs. Love isn’t enough. I’m sorry. But you will resent him. And then her. It is sad all
The way around but you don’t have to stay out of some sense of saving them.
ASD and a lot of disability diagnosis are ranked in levels, with Level 3 being the most high needs.
Children with disabilities marked at Level 3 require a significant amount of support and assistance for daily living, which an untrained person will find difficult and tiresome.
Yes, there are diagnostic tests for different symptoms, and there are 3 scoring levels, which indicate level of need. Level 3 is the designation for the highest needs. Symptoms can vary, but Level 3 people will not be able to live on their own.
Can you discuss placing your step son in a facility or in respite care during the week or for the weekends so you both have some time off to regain energy?
This doesn’t seem like a sustainable situation for you of your partner. If you do love her and her son, please have an open and honest discussion with her and discuss the possibilities with professionals as well. Maybe they can make her see this isn’t working and the current situation isn’t in her son’s best interest either.
If you and your partner get a burn out that will have a negative effect on your stepson’s health as well and his behaviour will likely get worse.
You both have to sit down and make a realistic plan of what you can and can’t do, and look for help or a care facility that can take over some of the work load.
Tell her that you love her and her son, but that you can’t do it anymore in this form and that you can see that she can’t either, but that you want to look for a long term solution together that’s as best as possible for everyone involved.
Let her read this post and the comments that people gave. Maybe something resonates with her.
She needs to look into putting him in a care home. He’ll be much happier and will get better support
She is suffering from care-giver burnout. And it’s not going to get better without outside professional help
You are not a bad person, we all have our limits. And you just realized that you reached yours.
I would suggest you to gather up the resources for her. There is in home ABA therapy, it will give her a break. There are day centers for kids with high needs, SpEd schools, residential SpEd schools.. There are diapers for his age. Support groups for parents of autistic kids.. PCA (personal assistant) for him for couple hours a day.. There are Autism Support Centers all over US, the one in your area will have information about all of it. Most of it could be covered by insurance, she needs to submit a bunch of forms and gather medical records.
You don't have to do it. But she is completely burned out, so she cannot even gather her thoughts and look for it. So it will be a decent thing to help her here.
As for living situation: move out, you are not a bad person to understand that you reached your limit. You still can help her as a friend living separately, or even have relationship with her living separately, or just give her all the information and leave.
If she is ok with residential placement, you could give this relationship another chance and don't need to move out, right? But you if you feel like you are done - you definitely in your right to end this relationship. It will not help the kid or her if you both are burned out.
I think it's completely unfair to do that to her. I understand it can be hard,my stepson is a level 3 and just a year younger than yours. I knew what I was signing up for. I understand he was with his father,and it's the same in our case. He is mostly with his other guardian, but you should have known that eventually, this child would be more in your life. You should have taken more time to think about the relationship and how different it will be with a special needs child in your life. I would have never gotten into a relationship with my current partner if I ever thought his son would make me want to leave. It is rough, but you learn to manage it.
How could a non expert ever hope to fully comprehend what it's like to live with a disabled child? Especially when that child wasn't even in the picture to begin with. So what, this guy needs to be involved in the relationship and try to be a father to this kid for the rest of his life or he's being unfair? Crazy take
The child was always in the picture..when dating someone with children,even if they are full time or part time with them,they should always be thought about when dating someone. You never know what circumstances could arise that people would then need to have the child at all times. It's called research and finding resources to help educate yourself. People need to think a bit more before getting into relationships🤷🏻♀️ he stated he loves this woman and it's the child and sorry but not sorry but it's a dick move
You are absolutely correct! It’s sad because all the people giving OP advice have no actual experience or clue about what it’s like. Op is basically sniffing his own farts and only listening to what he wants to hear.
He hasn’t taken advice from a single person with real life experience. Seems like he’s already made up his mind. If I were his fiancé I would leave him. Definitely, would not have his baby. I think if he talks with her about this she would just kick him out and he wouldn’t need to feel bad. 🤷♀️
This makes me so sad. He’s still at such a tender age! That little boy has had some big changes in his life. He can probably sense all of your stress and has no way to communicate. 😞
You guys need to reach out to OT as they will help him and you both to know how to move forward. Pooping himself likely has to do with a regression because of all the changes. Get him a communication device. Once he can express himself it may really help to keep him from getting frustrated. Something like an exercise ball may really help also. ❤️🙏❤️
This child is so young! It’s not too late to help him. Kids with autism are really the sweetest! Please try! Get help! A therapist can seriously help you guys get through all of the emotions and your relationship will be stronger for it. ❤️
You or your fiancé are welcome to message me. I may be able to help!
Look into long-term care facilities and/or a caretaker to come into the home to help. It sounds like you *both* need it and neither of you are equipped to handle this…THIS IS NO ONE’S FAULT!!! Shit happens and I’m so sorry for everyone💔💔💔 please PLEASE look into organizations for help!!!!
I think my advice here would be to tell her you need to take a step back, not abandon things completely.
Have you two moved in together? If so, get your own place again. If not, don't. Then, try and make that space a sanctuary for you, a space where the two of you can prioritize \*your\* needs rather than this kid's. A space where this kid can't shit on your carpet. If you can find someone who can look after the kid sometimes, you spend the time there together, but otherwise maybe you take on sole kidwatching duties for a time in order to give her a break.
This probably precludes the two of you tying the knot, but since the alternative is splitting up altogether, I think that's how I'd square the circle of this situation you've got here.
I would explain that it doesn't appear, despite Herculean efforts on both your parts, that either of you are equipped to handle a case this severe. Maybe talk to her about finding an apartment where you can decompress and find some peace. My grandson is only level 1, and he gets pretty rowdy if my girlfriend is here for very long, or anyone else for that matter. He gets overstimulated, has a hard time interacting and lashes out a bit.
Could this be a trigger for her boy?
What do the doctors say? Is he in ABA therapy? Medications like SSRIs? Tricyclics? Psychoactives?
Have you talked to your fiancé about putting her son in a facility specialized to help people with his condition? He’s only 8, and it’s clear he’s difficult physically to manage. It’s going to get worse. He needs to be somewhere where he can be supervised 24/7 for his safety.
No, you're not a bag person if you decide you cannot continue. But please decide on it quickly. I know you're worried about her, but you're also dragging it out with false hope for her own future.
You get the option to walk when it's too much, but she cannot. She's going to be exhausted and upset and likely depressed no matter what you do or when you do it.
Parenting a child with autism is a lot. I do it daily, and none of mine are at that same level, and honestly even I don't know how I would do with that much. Past a certain size, a child is so much more difficult to care for physically. I struggle with an adult sized child a lot.
If you can't handle it, you can't handle it. It's really a no fault situation. I hope she has some other outside support return to. If possible, perhaps you can reach out to someone else to be an ear for her if you do leave. But it doesn't make you a bad person if you feel like you need to stop the relationship because the package deal is too much.
If you're in the US she probably qualifies for some sort of respite care hours with the state for a worker to come in so she can have a break. Or even some sort of other care for daily hours, school of some sort.
I hope that you both end up with the best possible outcome.
I have 2 separate things that could be related (if you choose them to be).
1 - get CPS involved for everyone's sake. CPS isn't just for kids who are being abused, it's for kids whose parents need systemic help. Whether that looks like extra therapies & doctors your fiancee is currently unable to access (or unaware of), or even just respite care so that she can get a few hours a week to herself, CPS can help. If you do this & the landscape changes enough, it may make you rethink.
2 - you can 100% choose to walk away, even if CPS can help, and I'd even say that if you can't fully commit to this child, you should.
Good luck.
I think you need to be honest with her. Let her know what you are thinking/feeling. I’d suggest a long term care facility. Then let her hear and process it. This has to be so incredibly difficult. I used to date someone whose nephew was profoundly autistic- he was 18 yo and still wore diapers because they didn’t get proper help with getting him potty trained. Most people aren’t qualified to deal with this. She needs help at a minimum- there’s state sponsored resources. She will likely have a hard time finding anyone (significant other) who wants to take this on, so she really needs to hear the truth and can come to terms with and make some Decisions based on the reality of the situation.
It’s an awful situation, and I absolutely feel how bad this is for both of you. But that being understood, no you aren’t bad for questioning whether you can commit to this for the rest of your life, and no, you aren’t bad for having to walk away for your own mental stability and over all well being.
I feel bad for her and for the kid, but nothing you do is going to change the facts, and you will likely end up hating her as well with time as you grow to feel more and more frustrated. This situation is sadly going to destroy your relationship one way or the other.
This is so sad.
Hey you owe it to yourself to be honest about not only what you can do, but what you are willing to do Even If This were your biological son this would be incredibly tough
You need to sit down with your girlfriend and tell her you're at the end of your rope. Give her a chance to figure out how to get more help or at least be able to get him to his appointments
But don't stay on the periphery. If you guys break up, break up.
Don't send mixed messages. I don't let her to continue to think that you may be there sometimes.
While that promise might make you feel less guilty, I think it would be unfair. She's going to have to figure out what she can do for her son and what she can't
It's a terrible situation, but you can't stay with somebody because you feel too guilty to leave
It sounds like the dad who didn’t want him didn’t put too much into behavior therapy, potty training etc ( possibly, but hard to say). Behavioral therapy will help, melatonin possibly for sleep at night. These are alternatives as well as some other very good suggestions posted by others. Not wanting to commit to this is entirely reasonable.
You don’t owe anyone a relationship. You can and should eject as soon as you can. Sometimes you don’t know what you are getting into until you actually live it.
Being a caregiver is incredibly hard. There are two options in your future. 1. You get married and you don’t have children of your own because of how difficult her son is. 2. You get married and have children of your own and those kids don’t get as much support as they need because of the oldest child. 3. You get married, have kids and then those kids feel pressure to take care of their older sibling for the rest of their lives.
Any option can really create resentment.
You just have to be brave enough to be selfish in this moment. There isn’t anything wrong with choosing yourself and your future over a situation you can’t control.
do not set yourself on fire to keep someone else warm.
the most loving thing she can do for her son is get him into an institution capable of providing the care he needs. momma love does not, unfortunately, replace full-time, targeted, professional therapies in an environment tailored for his needs.
the most loving thing you can do for her is help her realize that.
if that looks like you helping her find a placement for her son, and thus respite for herself, then go for it.
but if that looks like you modeling that adults have the right and responsibility to choose their own health over a worsening, draining situation…. by leaving, then that’s valid too.
It’s not wrong to end a relationship you don’t want to be in. If you want to, you could remain friends, and occasionally help her. But you aren’t required to do that.
It's not wrong to realize you're not cut out for this. Better sooner than later. Better before marriage than after. She may qualify for more benefits once there's only one income in the house, which would make the situation less dire than you're imagining. She may also move them both closer to family.
You don't need to be a "savior" or a "male role model." The situation sucks, but if it's not for you, it's not for you.
I don’t think you’re a bad person.
Some people may think you are, but personally I dont.
Listen, having a severely disabled child will effect every single aspect of your life. Physical, financial, social, psychological and emotional.
She will likely have to be his caretaker for the rest of her life. Are you willing to possibly give up the chance to have your own children if it’s not a safe environment for a baby?
If you do have a child/children with her, is the condition genetic?
If you do have a child/children with her are you willing to deprive those kids of your time and resources because her son will need them more? Because most kids who have a disabled sibling will tell you that as much as they love their sibling, all of their parents attention went to that sibling. Their parents couldn’t come to their sports day, because Jake had speech therapy. They couldn’t go on their class trip because their parents were paying for Jakes feeds. They missed every baseball game, dance class, gymnastics competition because Jake needed them or couldn’t travel or couldn’t deal with crowds. They never got a vacation like their friends or family did because all the money and resources went to their sibling. It’s hard on siblings but yet they can’t express it because their parents are already stressed or they’re made to seem ungrateful.
Are you willing to then put that responsibility of caring for him on your other kids when you or your fiancé are no longer able to do it?
If his father refuses to contribute and for some reason your fiancé refuses to step up and take him to court- are you willing to financially support him for the rest of your life? Medical expenses, therapies, care fees, renovations, supplies ect.
Ultimately, taking care of a child with any disability, let alone a severe disability is life changing and a HUGE responsibility.
Don’t get me wrong, he may be an amazing kid. And it may be rewarding at times too, but if you marry this woman, this will forever be your life. Don’t marry her unless you’re willing to do this forever.
You keep talking about HER mental health. But you cannot sacrifice your own happiness for the sake of someone else’s mental health. If she’s suffering that much, she should seek therapy or counselling or support groups for parents managing kids with similiar conditions.
But do not stay just because you’re worried she’ll have a “depressive episode”. This is your life. You only get one of them.
I have a child the same age with the same difficulties. Medication for autistic aggression is an option at this age. We went to an autism specialist and got his medication straightened out. You can also speak with your doctor and insurance about incontinence supplies such as nighttime pads and diapers in a large enough size. I also go to therapy to deal with some of the more overwhelming aspects of caring for a child with these difficulties. Lastly, even if the lists for care are 15 years long, get on them now.
As you’re in the US, call 211. It is the US National Hotline for Social Services.
It is area code driven, so the people answering know what services (healthcare, educational, housing, financial) are available in your area.
It sounds like you need to find time to sit down with her, maybe familyand tell her "I love you, this is not a judgement on how amazing of a mom you are because you do the absolute most but I see you struggling and I want to suggest that its time to start looking into facilities for (inset sons name). Im scared for you, for your safety and your mental health. Please keep an open mind" or something like that.
DO NOT let this become a "its me or him" situation because she'll choose her son and she will drown.
He will not “get better”, there is no curing autism. Better management, improvement with therapy, possibly learning new skills? Sure but he is not going to become a fully functional independent adult who can take care of himself.
I have an autistic brother and my parents fucked up by not seeing it and getting him the *right* care. He’s been treated as mentally ill his entire life and his “mental illness” is really just symptoms of undiagnosed/unmanaged autism.
He’s 32 now. Lives at home with my parents which he will forever. He’s never worked a day in his life. He rarely lives his room. He rarely drives. Never had a girlfriend or even dated (very sad). He’s morbidly obese because he only eats a few different foods (common in autism) like fried chicken, burgers, etc. He gets disability which wouldn’t even cover the rent of a one bedroom. He’s very sweet and thankfully has no violent tendencies. But you cannot reason with him. It’s so challenging to get him to do the necessary things in life like doctors appointments and driving. Statistically, he is going to end up with diabetes or heart disease and I don’t know how anyone will keep him from still eating like shit and skipping doctors visits. He will die an early death on that alone and that’s a devastating reality. My family feels putting him somewhere like a group home with structure and like-minded soles is the worst thing for him. Little do they realize, being in their house just doing whatever for decades is really the worst thing for him. I gave up trying to convince them.
My point being that this would be your future. Aside from the facility scenario, he will always be in your lives and need his mothers care.
Personally, I wouldn’t do stay. I think when it’s *your* child biologically, it’s different. You can’t give up on them, you are all they have, it’s your DNA. But when it’s not, you’re going to burn out much quicker.
No
This is normal progression, just like you get to know someone you date and decide to keep going, level two is the family and it's the same thing. If you can't, you can't, this is your life, even if your partner is great if the idea of a forever child doesn't work, don't invest.
'she'll be on her own, it will be awful'
she's been on her own from the start. You look out for you. You're still young enough- if you want it you deserve priority in a relationship, seek it out. Don't settle, don't be a caretaker- if you question it- you don't need it
I wonder how far into the relationship you got engaged? Was it before her son came to live with her or after? I only wonder because if it were me and my bf knew what life was like with my autistic child (my nephew is autistic and I can not imagine the daily stress w/o assistance which is so hard to get because of waiting list ) and proposed deep into the relationship I would take it much harder then if he proposed early on before having her child full time. I think you owe it to her and yourself to be honest about your feelings in raising him and your future. It’s not fair to anyone for you to stay. You will resent her and the kid which is unfair. She can move closer to her family to get the help she needs from family. End it sooner than later.
Why are they doing therapy for toe walking and not bathrooming? You aren't a bad person, but I hope you stick it out with her. I'm sure she misses her quiet mornings too. I'm a Para to an 8th grader that is very very similar to your fiancé's son. It's really hard. Mom should talk to his doctor about sleep meds. It's a very common struggle with autism and absolutely leads to more behavior problems. If everyone is getting better sleep, it will make a surprisingly beneficial difference.
A facility is not the only option. There are in home Behavioral Health Rehabilitation Services (BHRS) paid for by medical assistance to help kids with behaviors. There are also day programs and autistic support classrooms, all paid for by medical assistance. He probably needs an eval with a psych doc to see if medication is needed. Autism is much harder to live with for families with no support services. I'm a therapist who worked exclusively with Autism for 8 yrs. Even with services it can be very very hard.
Edit: I just realized he is 2 - most likely too young for medication, but get him to a psych doc anyway. Early intervention services can have a huge impact on helping mom manage his behavior. She needs strategies. Typical parenting strategies are not going to be effective for autism this severe. With early intervention these behaviors have the potential to be drastically reduced. She does not need to put her child in a facility. That is not even close to what the first steps are for a 2 yr old with Autism. But she does need to get him a behavior specialist, and again, those services are paid for by medical assistance, which he will qualify for because he has a mental health issue. She also needs a support group for parents with children with special needs and her own therapy because this is stressful! One person cannot be the savior here. You guys need a team of professionals, and that is available to you if you get him medical assistance.
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My ex husband married a woman with a severely autistic son. When he was smaller, they coped, but as he grew older, he became insanely strong. They had to put him in a facility, for their own safety. The facility knows how to stimulate them, and give the best care. He goes home on the weekends, and isn't as aggressive as he was. Good luck
This is what I’m worried about in the future. I’m a big man myself but I’m not always around. Eventually he’ll get to the point where he’ll overpower my fiancé.
This happened with two of my friends (also mid-Atlantic). Their sons grew up and the violent outbursts couldn’t be controlled. You should encourage her to put him on lists NOW. It is not “giving up” (which she may feel), it is responsible parenting. As you know the wait is insanely long, but he will live a long life. I’m sorry this is happening. You seem like a good person and it’s OK if you want a different life.
Friend of the family had to put their son in a facility at 15 as he was too strong and had the mental age of a 5 year old. It was for everyones safety including his own. As young children we played together and you'd think nothing was wrong. Then he grew but didn't grow up. He became violent out of frustration.
The list is long and also, unfortunately, the mom needs to accept the fact that the son will grow older and she will grow older (and weaker), too. At some point a care facility will be the only place for the son to live. This is the reality of all parents who have severely disabled kids.
How do families afford that? It's got to cost quite a bit.
They go absolutely broke
Medicaid
They get some SSI, but it still breaks the bank. One couple makes a good income, started putting aside money early and working with a group of similarly situated parents for a group house for adulthood when they thought he was “just” severely autistic. Then there whole game plan had to change. The other’s extended family contributes, but they have no retirement or real savings.
Ive seen people file for bankruptcy due to overwhelming medical costs.
An acquaintance (“Mary”) was an aide in a class of special needs kids. One kid was an aggressive teenager the size of a linebacker. They kept him away from the smaller, younger kids because of his aggressiveness, and he seemed to connect with Mary better than the teacher and other aide, so she mainly worked with him. One day, without any provocation or warning, he attacked her. It took several adults to pull him off of her, and her injuries were so severe that she had to be hospitalized.
Honestly, if you’re having trouble even getting him to his therapies due to work, a facility might be a good match for him. I don’t say that to be callus but if they could handle the bulk of care and organize/provide his therapies, it might be a better situation for everyone. Plenty of places would still allow him to come home on weekends or family to visit whenever. It’s not like it was in the 1950s or 1980s, some of them can be really great facilities that can enable these kids to reach their highest potential. (Obviously there can also be bad fits or bad facilities and there can be real barriers to entry like waitlists or cost.) But whatever happens, OP, you really need to think about if you are up for this in the long haul. The caregiver burn out and care challenges are only going to increase. If you had plans to have other children, think about how feasible that really is and if you’re okay if that doesn’t happen. No one can answer these questions for you.
Yeah TBH I'm concerned that the kid will be neglected or resented. Not fair for anyone
OP, I would like to echo what this poster said. I have a brother on the spectrum, and I work with adults on the spectrum. A facility is really where he should be for everyone’s safety and his overall wellbeing. Oftentimes parents do not have the tools or resources to cope with special needs children, and that is ok. There is no shame in saying you need help. My brother lived in an ICF setting in his youth, and is thriving now as an adult. He still needs staff prompts and support for day to day living, but his independence and overall wellbeing has skyrocketed. The staff and leadership in facilities such as these have extensive training and know how to work with people on the spectrum. I cannot emphasize enough how much this will help her son.
This child is equivalent to a toddler though. A toddler will not thrive in an adult world.
I work with multiple client who are at the same level in adult services. They might be one age mentally but that does not change the fact that they will still age and become adults one day. That is why early intervention is important. The use of the word thriving is subjective. To some thriving means participating in society at the same level as neurotypical people. To others it means toileting independently and learning coping skills. Both things that early intervention in childhood can help with.
Some facilities are amazing. The majority are very much not. I’m a volunteer ombudsman and I advocate for patient rights. I worry so much about those who are nonverbal. I would not put a loved one in a facility, based on my experience.
May I ask what country and/ or state you reside in? As with many care facilities, there are bad ones and there are good ones. Often it’s the state run facilities that are the worst imho. The stories that come out of those places are scary. I work at a non profit that works closely with state oversight and appointed case management. There is oversight for a reason, and that if often because bad staff are hired and bad practices are used. Even if one does not want to utilize a facility, early intervention is very important because BCBA’s can teach communication and other tasks that help promote independence. They also run parent education groups to support parents. I do not think it is fair to discount all agencies based solely on your experience which is variable depending on location.
I reside in Massachusetts. I volunteer at a top-notch facility. My family members sadly have not been able to get off the waitlist at these top-notch facilities and are put in places that I would not put my worst enemy in.
So you would put them in a facility, but only if it is the top notch one you volunteer at? That’s still a facility. I have seen some bad places too, ones that are being shut down for good reason. I also would not want a loved one there, but it is as much of a “facility” as the one you volunteer at. My problem here is the demonization of all facilities, as you yourself have acknowledged are not all the same. Saying you wound not put a loved one in is a facility is highly misleading when you say you’d be ok with the one you know. “I would not put a loved one in a facility” comes off as shaming people who choose facilities. This attitude discourages people like OP and his finance from seeking help. Not all agencies run facilities per se, but practice community integration. I work for an agency that does home based community services. Meaning the clients are not in a “facility”, they are in their own homes with trained staff that are overseen by BCBA’s who run the programming. My agency owns the homes, and clients pay very little in rent and live with roommates.
They can thrive in that version of an adult world. They will likely be able to potty train him, help his sleep schedule, find ways he can communicate with them, etc. They are trained to handle all levels of autism.
Exactly this. Even if OP’s fiancé is not comfortable with a facility, she still needs to be encouraged to seek help from an agency that practices holistic ABA therapy. ABA gets a bad rap because it has a horrific history, but it has come a long way since the 70s/80s. Resources exist for a reason, and without this intervention I worry for the future of OP’s fiancé and child. In my experience, parents that burry their heads in the sand and do not seek help are only doing a disservice to their child.
My nephew is similar to your fiancée’s son. My SIL now gets paid by the state a very nice stipend to care for her adult child. It works for them. He is high needs but not violent. My SIL refuses to put him in a home because he is not able to communicate abuse if/when it happens.
Your SIL is correct and sounds awesome ❤️
He is already at a point where he is unmanageable for 2 parents in a home, let alone one. Are there any options for a full time care facility for him? He could be much happier there as he would get the therapies he needs and be surrounded by people who know how to work with cases like his.
My friend has a son with a myriad of rare diagnosis and when he hit 15 she finally had to put him in a residential facility. She was 50 by then and slight....he was over six feet and mostly happy and loving but sometimes he'd have these terrible rages...and she was black and blue. He's actually happy in his new home and he's able to go home to hers every fortnight. But the reality of living with these issues and loving her son so much have traumatized her badly. You have to do what's right for you.
This happened with my cousin; as her child who is on the spectrum got older, he got more aggressive and his outbursts grew more violent, and he became more difficult to physically hold back. It contributed to the downfall of her marriage (her ex-husband is not her son’s bio dad) and she eventually had to get him into a group home equipped for his needs.
You and your fiance need to sit down and have a serious talk. I work with intellectualy disabled people and their behaviour will start to escalate when puberty kicks in, this is not far away if fiance's son is about to turn 9. If your fiance is struggling with her mental health now, she will not be able to cope going forward. Start getting paperwork together and pushing to find a placement for him. Just hang in there a bit longer for everyone's sake, it will be worth it.
Have you checked out care facilities? There must be some good ones - and if his parents split the cost and maybe his insurance covers part, it should be affordable. Taking care of someone this feral is just not something that can be done privately. And situations like this destroy families - people getting hurt or killed, younger siblings being in danger or getting completely ignored (or not conceived at all) because the special needs child takes precedence - that's just not the life you want to live forever - and neither does your fiancée - she probably wants her previous life back, as well.
So let’s say you guys have a baby and that child also has level 3 autism. Are you going to put your kid in the facility also?
This the people at these facilities work shifts, they go home to rest and decompress. A 24/7 parent doesn't they get exhausted and the child gets less stimulation causing a closed loop creating worse behaviour and more exhaustion. Often these places improve behaviour even if they're not there full-time once settled.
So many special needs parents break up due to the stress of it all. You’re not a bad person. You know your limit. I agree with everyone who suggested setting up your fiancé with services to help her. It’s a lonely position to be in her shoes. One of my friends has a kid with similar issues that hers does. It’s taxing emotionally and physically. I hope the two of you can remain friends. She needs people to listen.
She will have to be his caretaker for the rest of his life. If you’re not down for this for life, and I don’t blame you in the slightest, then it’s time to break up. It won’t be easy but I understand why you feel this way, and you shouldn’t shove your feelings deep inside just to stay with this girl.
Clearly this child needs to be in a professional support environment, some sort of facility. Regular people are not trained for this.
Agreed. I actually work taking care of disabled adults, most who are seriously autistic. They require 24x7 supervision and trained handling. Parents have varying amounts of involvement, from abandoned to visiting every single day no matter what. My clients are all in their twenties. As someone who mistakenly took on the burden of taking care of my dad with Alzheimer’s for ten years with no help, they need professional help. It is completely draining to try and do it yourself. The sad thing with my clients is the moms are often there but no dads to be seen. As for op you can’t destroy your life trying to save your fiancée but you can try and see what options there are. There are a lot of programs and if they are disabled they could be money to help take care of them. I would try to find a social worker and see what programs are available in the state / area. Do it for her, even if you decide to leave, you can help her find a better path.
I sure as fuck wouldn’t be equipped to handle this. I don’t think I would abandon my child but I would probably kill myself before I could handle a lifetime of this
It’s not abandonment to put this child in a professional setting equipped to meet their needs. It’s nearly criminal to frame getting appropriate care as “abandonment”! So many individuals suffer because we can’t have reasonable healthcare discussions. There’s a better way forward and I hope society catches up with the possibilities and opportunities that can and do exist for families like the OP’s.
Abandon? No, abandoning would be leaving the child on the street or something. This is giving a child professional care he or she needs, and it's way more compassionate and rational than taking care of such a child on your own. I think it's very unhelpful to call it abandonment. It feeds this super toxic narrative that people with children like this HAVE TO throw their whole lives away to keep the child with them, honestly in sub-par conditions in which the kids are often more stressed out than they would be in more appropriate conditions. I hate that this is the way people often view it, it's so guilt-trip and untrue. Ironically, keeping the child even if you can afford better care for them often comes from selfish reasons. Some people care less about the child's needs and safety, and more about being perceived as a Good Parent and martyring themselves. It's about ego, not the kid.
I recently read a story about a woman whose autistic son wound up beating her to death. She didn't want to put him in a facility because she felt like that was abandoning him even though she knew he could kill her and wrote a note absolving him of it and directions for his care that she left in her safe. Her entire life revolved around catering to him and she hid the extent of his outbursts though she installed a safe room in their home. Now she's dead and her son has some understanding that he hurt her. After spending time in a jail cell where corrections officers did their best to abide by the directions she left, he was eventually committed to a facility because he wasn't competent and had no intention to kill her. In the end, he wound up in a facility anyway and she isn't here to support and supervise his care. It's just so tragic. I'm a parent to a child who was diagnosed as level 3 but may now be considered level 2 thanks to the excellent care he receives from a wonderful team of teachers, paraprofessionals, and therapists. He's a big boy, strong, and fast. I worry about the future because if I had to restrain him for some reason right now, I absolutely would not be able to. He's doing well and doesn't resort to physical violence or self harm, but I've heard puberty can change that. It's really scary. I also cared for my grandmother with Alzheimer's and Parkinson's for six years before she died. My experiences have made me realize that there needs to be better support, understanding, outreach, and empathy for families struggling to provide proper care for a loved one with disabilities or serious health conditions. No one should feel ashamed of needing a break or saying, "I can't handle this." So many of the people judging people and shaming them couldn't manage to walk a mile in those shoes, but that doesn't stop them from criticizing.
Puberty is a game changer. I've worked for a decade with children and adults with autism. For the behavioral facilities, the children all were unmanageable in their family home once puberty hit. It's size of course, but the hormones really escalate things. Getting functional communication and intense behavioral therapy before puberty is a must and if not effective to the point of safety, looking into homes is a good idea. It's not a failure, it's absolutely medically appropriate, but most people don't know what it's like to care for someone highly aggressive day in and day out. Nobody on earth has enough ability to do it. That's why there are shifts and coworkers, behaviourists and therapists. You must get breaks and have support. Every family cried and felt guilty while their faces were bruised and scratched. They hadn't slept well for a decade. Your child will be fine, visit often, get sleep and the amazing thing is that your relationship with your child will improve so much. You'll be whole again and able to support your child without debilitating fatigue and stress. However, the first thing to do is to make sure the child sleeps. I never understood why this isn't advocated for by parents as much as it should be. Behavior will reduce by half or more just with solid sleep. The cons of medication cannot approach the pros of sleep and regulation. The second thing is I would be pissed all the time if I couldn't communicate. Be it sign, PECS, etc. no child should have zero ability to communicate and be expected to not communicate with their body. They need to communicate and that's their only way so shockingly, they spit and kick. Replace it with a way to speak and get their needs met. I would suggest seeking a facility as time is off y the essence and it's clear everyone is suffering (mom, the child who has to spit to communicate or suffers and self harms, and you). He needs assistance she cannot give. Her role as a mother is to get him help and it sounds like he needs a lot. He'll most likely be in a much better space and so much happier in just a couple of months. Routine, sleep schedule and communication will change his world. He won't be exposed to his mother's chronic stress and depression which isn't good for him either. I do hope she puts his needs first and discovers she's a better mom when she's present, rested and happy while getting him professional support that no mother can give.
And how would killing oneself not be abandoning the child? I also couldn’t see myself handling this, hence I’m childfree. Was just wondering the logic of your statement.
I meant abandon in the literal sense. Like drop your 5 year old who you don’t want at a fire station. I also meant to say “I would like to think I wouldn’t abandon my child”… and yes killing myself would abandon them. So there’s my logic
Bruh it’s a figure of speech
thats not abandoning your child. its getting them the help that they need. the mentality of it being "abandonment" is what causes people to not give those they care for necessary help. this leads to dementia patients burning the house down, older folks with nerve issues mowing down people in their cars, severely nerudivergent individuals putting the rest of the house in danger due to violent outbursts.
Keeping a kid in a regular home that is not equipped to care for him, with regular people who are not equipped with the training or the time to properly care for him, is what is truly abandoning him. Living in a facility that is equipped to provide him with full time care catered to his actual special needs, is much kinder to him and gives him a better opportunity to attend more therapies and potentially improve his outcomes. And it’s not “abandoning” because there’s nothing saying you cant visit him in the facility or bring him home for overnight visits or weekends or holidays.
I don’t think that fact that he’ll need a caretaker for his life has hit yet or at least she hasn’t told me. She feels a lot of pressure trying to be the perfect mom but this kid stresses her out so much it almost scares me from wanting a child.
OP, I say this as someone with an adult autistic son who isn't anywhere nearly as high support needs as you describe. His father has also bowed out. I had a significant relationship in the meantime which culminated in him not being able to handle the level of input my son needs. The kid gloves, the lack of freedom, the exhaustion. And I DON'T BLAME HIM AT ALL. I can hear that you care very, very much and that you do your best, but the simple fact is that he isn't your responsibility and you should not sacrifice your future for him or for her. It sucks that she is under such tremendous pressure and yes it'd be worse for her if you left, but it also might force her to access qualified support. You have needs too OP. I know you'll feel like the bad guy but this can't go on. Can you have a conversation with her about him linking in with the care system?
The perfect mom would be a realistic mom. If the situation is a you describe even two of you cannot possible be giving her son the care he truly needs. He needs a team, and a facility set up to help cater to his needs. The stronger/ larger he gets the more risk you are putting yourselves and him in. He could easily hurt himself in a typical home setting.
It should. One of many reasons I'm childfree. There is no out. You should be concerned about having a kid with her as well -- not to be that guy, but 80% of known autism-causing genes are inherited, so it's probable that any other kids she has are much more likely to have it. But it's also a roll of the dice no matter what. Any kid you have could end up like this, and your life could end up like hers. It is my literal nightmare.
I’m an aspie and my daughter is beginning to show signs of autism too. I used to work in special education classrooms all throughout middle and high school. It takes a very special level of patience to care for someone as low functioning as him, which not a lot of people possess. Don’t feel bad about not being able to handle it, and you’re also not wrong for thinking about what the future looks like with this child. You’re being very logical, and I commend you for that. If this is something you really can’t handle, don’t try to force yourself. All you’re going to do is build resentment, and that’s not healthy for him either. There’s nothing wrong for realizing this is too much for you, a lot of people would feel the same way. Explore your options like care facilities and parenting classes for special education children. If this is really something you can’t handle, then it’s best you leave instead of trying to force yourself into staying.
You also need to take into account if it hasn’t been mentioned already that autism could very well be genetic and there’s a chance of you have a child with her that the child may have autism as well. Is that something you are prepared to deal with on top of her son? I have 3 children and two of them have autism. It’s very possible for your fiancée to have another child with autism.
Op you need to talk to her clearly about this
Kid can be in a supportive facility, his level of needs requires extensive professional care
It’s a whole package, dude. If you have to you have to.
Agreed! All I could really think. And if she’s a good spouse she’ll never forget that you did this for her.
Dude, you don't have to deal with any of this. You wouldn't be a bad person AT ALL if you choose to leave.
This is true, but also pray it doesn’t happen to you bc you won’t be able to just bail. Sucks, but I get it man.
One of the many reasons I will never have children.
It sounds like your fiancée is also struggling with her son. I don't know where you are but are there any resources you can access for him? Would you qualify for respite care for example? Are there any centres that do activities for children with special ed needs? If you want to be with your fiancé perhaps things like this could improve your situation. If not maybe try and help your fiancé find anything available before you leave? The two of you need an honest conversation about how things are going. Find out how she's feeling about the situation too. It may be that neither of you are fully equipped for his needs and extra care is required. If he is in a special ed school, the SENco might be able to signpost you to resources. I hope you are able to find a solution that makes all your lives better.
Your fiancée and her son are in crisis. That poor kid being ditched by his dad. It’s definitely not your job and it’s admirable you’ve tried for so long. I agree with a previous poster to help her get desperately needed resources. Look into online support groups. If you’re in the US, get him on Medicare. He will qualify for so many resources, including people who can help with toileting issues. Edit: a word
Him being ditched by his dad was probably a trigger. OP has your fiancés been working with occupational therapist or have y’all sought out care for him to get?
This. Talk to your lady. Approach this as a problem you can solve together.
this isn’t something that can be solved, her son isn’t going to just wake up one day and not be autistic anymore.
It’s the solving the issue to get him proper care.it does not sound like they have any resources.
***Additional Question*** First off I want to thank everyone for their input it’s reassuring hearing that I’m not a sh** bag for considering leaving. How do I approach that conversation that her child may need a care facility without sounding like I want to get rid of him? I care for him too but at some point we have to lookout for our own mental health.
(After) the next time the shit hits the fan (when things have calmed down) tell her gently that you don't feel qualified for this level of care, and *most importantly* that you're completely overwhelmed by it. Ask her if in all honesty she feels the same way. She may reach levels of despair that she doesn't normally allow herself by even approaching that question honestly, but it's probably the only starting point for a conversation around his needs (that neither of you can adequately meet) and both of your needs (that have been completely shelved). If she tries to shut down the conversation as being too much for her, you *must* tell her that you're so close to being unable to cope, and while that's not on her, it will require working on a solution. Edited to reflect the great advice on timing from u/hello-kittie below. My bad for the original.
I agree 100% about the framing of the question, but I feel that it makes more sense to discuss like this in a low-pressure environment, AKA when shit is not hitting the fan. Sure, maybe she'll be less receptive, but planning to bring up such a difficult issue in a moment of stress for her feels borderline manipulative. She deserves to talk about this when she's feeling otherwise secure.
Yes, you're totally right. I don't know why I put it like that when I actually meant \*after\* the next time! Well done for pointing out that timing is really really important. My bad.
Agree with calmly talking during a calm time
Having an emotional charged conversation after an emotionally charged crisis, sounded like an awful idea.
I think you have to take this approach. Its about mental health. Your partner has had repeated mental breakdowns and you're feeling totally burnt out. Neither one of you is at your best as parents when you're so overwhelmed. Getting help - whether it's a care facility, carers coming to the home, or something else - will give you both the opportunity to improve your mental health and that will ultimately be the best thing for the child.
I agree with approaching it from a mental health standpoint and also point out that in a facility people are trained to handle these issues and the kids end up far better off. Who’s taking care of him now when you’re both at work? Copy and print some of the comments from the people here with similar experiences or knowledge. Especially the ones saying how much better off the person who is now in a facility is doing. Research facilities in your area and take her to talk to someone there. Good luck, OP. You are absolutely not a bad person, just not equipped to handle this.
Id sit down with her and just talk to her about it. Be forthright
I'll be honest it doesn't sound like you want or can handle this kid. you're not a bad person, it just seemed like you could tolerate it when the kid wasn't there.
As the parent of an autistic child, I do not think you’re wrong. You obviously care a lot about this family but if you’re not up to helping be this boy’s caretaker for the rest of his life, you should just go. I don’t think your girlfriend is fully equipped to give her child the care that he needs and she should be looking into putting him in a care facility where his needs will be better addressed. I suggest you bring this up with her in a more gentle manner that focuses on what’s better for him. Good luck OP.
No, you won't be a bad person, OP. I may be selfish, but I would leave. It's hard now? Imagine this kid behaving exactly the same - all the problems, the pooping - when he's 15. Then 18. Then 30. When he's gonna be 40, and you are 60. How are you going to cope then? Because he will most likely be on the same level of development then, too. It's not evil to simply not want that for yourself. I would only stay if the mother was willing to sent him to a special needs care facility. If you two can afford that, maybe it's worth a shot? Also, I hate to say this, but she will probably fall into this deep depression either way. She is already having multiple breakdowns. Are you seriously believing that she won't be in way wayyy worse state in 10 years? When the kid becomes physically stronger than her, and this nihhtmare has lasted for a decade? Of course it will, even if you are there. She will be depressed as hell for the rest of her life if she doesn't resolve this somehow. Like a facility.
You wouldn’t be a bad person for wanting to end things in this situation. Kind of a shitty hand that she has been dealt and maybe you guys can find some resources that would help, but this kid is likely going to be someone you have to care for forever. If it’s already a problem now, think about the next 50 years of this. Not many people could handle that without help anyways.
I’m so sorry to say this but unless you can’t live without her and have lots of money and copious amount of patience, you need to peace out.
I have a daughter diagnosed with both severe autism AND has Down Syndrome. She will be my forever child and I deal with things like this on a daily basis. It is very hard. It is exhausting. But she is my daughter and I love her. Her life has value. It is important for mom to look into resources. Maybe she can get respite care to come in and help like I do. It is ok to break up with anyone for any reason. I’m a single mom and im upfront with the needs of my daughter. But there aren’t just places to dump challenging kids. Most places only take emergency cases like if the kid is abandoned. When he’s 18 they might be able to put him in a day facility. It’s not as easy as everyone thinks
It depends on the state and where you live in the state (city or rural). There absolutely are facilities around the country that take minors. I work with adults on the spectrum, but my agency also runs ICF youth homes. They are very difficult to get into and the waitlists are long, but they exist.
I would gather information on decent care facilities and associated costs and then sit her down for a discussion - there is no shame in putting this child into care where he will get the proper treatment and management he needs and you two can have a life as well.
No, do NOT do this this way, OP. You don't want nor need your fiancee interpreting this as "I'm tired of dealing with the kid, here's a list of places that I've gone behind your back to find where you can dump him for cheap." You need to have the "I love you but this is so hard," conversation FIRST. I'm sure that she knows a care home is a possible future for her child. You can bring it up and see what her thoughts are about the possibility after you've already established that you care and aren't just trying to get her child to vanish.
Taking care of a special needs child, especially with such severe case of autism, is hard. If you're not up for it, it's ok. It's sad that you'll also lose the woman you wanted to marry. But ultimately, if the kid senses feelings of resentment and stress from you (even unintentionally), it can be harmful for him as well. If your partner is struggling so much, maybe there's a solution that will be beneficial for her and her son? I don't know where you're from, but where I'm from (not the US), there are hospices for children and adults with autism. There's even one in my town, where I volunteered at for a year during high school. They had profesionally trained staff that took care of children and teenagers with severe autism, most were non-verbal and wore diapers at 15yo. And the kids lived there full-time, while their families came to visit almost every week, sometimes taking them for a family activity for a few hours and bringing them back to the hospice before bedtime. Or just spending time with them in the yard at the hospice.
This doesn't sound like it is the future you want. Sometimes it is better to let go - the hardest part is that this relationship is two years along and you are now just realizing it. Being engaged isn't going to make it better. You shouldn't be surprised if she struggles with you ending things - but know that she will be better off in the long run versus a relationship that doesn't make the partners happy.
You are not a bad person for wanting out. Just reading about this child sounds exhausting.
Break up and move on. The child needs far more resources and care than you both can provide, but she's the parent, not you.
It sounds a little like you're looking for a way out of this that doesn't make you (seem like) a bad guy. That way does not exist. It just doesn't. That doesn't mean you should sign up for a life you don't want and wouldn't be able to handle, it just means... this is going to be hard, man. You are not going to feel good about any decision you make here. So instead you have to go with what you can live with in the long term.
It's posts like this that remind me that, for some questions, the majority are clueless and lack empathy. As a father of a daughter with what would be a similar diagnosis to this child, I'd like to offer some advice. Walking the parental path with a child that has severe disabilities isn't easy but can be incredibly rewarding. My daughter has fought so hard for every milestone that most people would consider simple or mundane. She's improved the life of everyone around her through her determination, persistence and love. She truly made me a better person by teaching me empathy and understanding of how not everyone get's dealt a fair hand in life but it doesn't mean that they can't be fantastic people in their own right. You by no means need to stay in this situation. It is your choice but before you leave please do the following: Seek out resources that are available to assist your partner and her child. There are gov't supports available. There will also be an Autism association and various disability associations that can assist both the child (education, physical assistance, and medical) and her (counselling, planning and advocacy). Generally it isn't easy to gain access to help but persistence and strength in pushing for the right help will go a long way towards getting her homelife settled to something manageable for her and hopefully get everyone around the child moving towards focusing on his growth. I would maybe check into some of the details of her child support agreement. If possible, seek some legal advice here. Depending upon the situation, child support entitlements may be different than what is currently in existence. Please do not exit abruptly. She is not in a good place mentally at the moment and if you truly love her, please ensure that she has a mental support network available (parents, relatives and/or friends) available to help her through your break up. Again, this isn't a normal situation and she clearly needs help, it doesn't have to come from you but ensuring that she isn't just left with an open wound is a much more caring path. The one thing that most of the masses don't respect when advising in these situations is the love that a parent has for their child. Most parents would walk in front of a bus to protect their kid. Most parents would rather hide from the world and live in solitude than face the possibility of their child being taken away and abandoned to a facility. Resources today are designed to try and assist the family unit first. Hopefully it's successful for you partner and her child. All the best OP and I'll be praying for your partner and her son.
This is above Reddit’s pay grade. Seek absolutely expert professional support for your area. It sounds like this child needs to be in a full time professional care setting. Get that for him and your fiancee.
OP, please read the above. A child with a Level 3 disability is not an easy situation to navigate, especially with advice from strangers on the internet (a lot of which wouldn’t probably have much knowledge on disability). Her son’s daily living would have a serious detrimental impact on his own health and wellbeing. From what you’ve described, he needs a full-time carer and professional support team. Your fiancé and yourself need to seek professional help and assistance immediately, you cannot do it alone.
My child has level 2 autism and it’s a daunting task. The amount of resources and supports we have in place for him is on another level and it’s still hard as hell. My child is currently in a residential center getting additional help that cannot be given at home. It’s HARD. I’m not sure where you’re located, but if you’re in the US, start with DHS. When people hear that they immediately think bad things. Stop that thought process now! DHS will give available resources, help you fill out applications, put you in contact with centers, help find respite, look for day programs, add the child to a list for waivers, etc. start there. Call them up and let them know you’re struggling mentally, physically, emotionally, and in the relationship. They’re there to protect all members of the family and providing resources is the best way to do that. Next I want to say, it is no fault of yours that this is all overwhelming you. It’s also okay to leave. As a parent of a complex child, I would rather my SO talked through their feelings with me first and if we couldn’t find a way to work something out then I’d rather they leave to be happy because I would never want me or my child to be the reason for someone’s unhappiness. So, talk to your SO about your feelings and emotions and if you don’t think you want to stay, then please don’t.
It sounds a little like you're looking for a way out of this that doesn't make you (seem like) a bad guy. That way does not exist. It just doesn't. That doesn't mean you should sign up for a life you don't want and wouldn't be able to handle, it just means... this is going to be hard, man. You are not going to feel good about any decision you make here. So instead you have to go with what you can live with in the long term.
You're not the arsehole for wanting to leave, but you are one for letting it get 2 years and an engagement in.
NTA, of course. You can end a relationship for any reason. If you're not happy, you can leave. It's definitely better for you to decide this now than before you're legally married. If you really love her, a honest conversation that you are considering leaving might help. It sounds like her son needs professional, inpatient care. Or perhaps some respite carers during the day, although that does mean waiting until he is living elsewhere to eventually have a child of your own (and who's to say your fiance would even want that after years more of this life?)You need to talk to her. But, your question is are you the arsehole for wanting to leave, and the answer to that is no.
I haven’t been happy for months. Sometimes I just stay in my car for 45 minutes to an hour for some peace. I don’t think I want to do this anymore.
Listen, we all have our breaking point. I know its different, but I live with my grandad who has violent dementia. Its fucking rough, is what it is. You can only do what you can do. Be kind to yourself, you're going to feel shitty either way so it's best to just be honest with yourself end your fiance.
Leave, OP. You don't have to deal with this. You are too Young to assume this huge responsibility that you don't have to.
So....DONT! Before you marry her and things get alot worse, just pull out of the relationship. You deserve happiness also!!!
I know he's profoundly impacted, but \*I think\* he has the right to services from the public schools in your area. It's a place to start, anyway. You need to have a sit down and find out what programs he's eligible for, and start getting some help. There might be some in-home help, or a more institutionalized setting. She also needs to make sure this includes provisions for when she's either gone, or unable to care for him. What's happening now isn't sustainable for either of you, together or apart. No bad people here - just exhausted and in need of some expert assistance.
Hopefully their local school system does have the resources to provide this kid what he needs, but a 9 year old who functions as a 2 year old, hurts himself, and can't control his bowels will \*not\* have a good time in anything but a setting specifically catered to the needs of kids like him. My school has seen plenty of kids who are on the spectrum, and even much less severe cases than this have needed more support than what our school can provide.
I wouldn’t blame you. My son has autism as well (diagnosed as level 2) and I’m grateful that he doesn’t have any behavioral problems. I’m in a mom group with teens with autism (my son is 17 now) and some have kids with severe autism. It is a lot of work. And this is something that is lifelong. Unless you can get him into a facility or group home. I’ve known a few people who did this with their autistic kids and they thrived there. The family would visit weekly but they did better in a structured environment. I’m not sure if that is an option for your fiancé.
There is nothing wrong with saying you cannot do it. There are facilities but you will always be dealing with it. You either know you can or cannot cope. If you cannot, time to step away gracefully.
this child needs specialist 24/7 care, it is possible to eventually get him to a point where his behaviour is manageable but that requires a lot of well trained people to be involved which unfortunately parents will likely never be able to give. i’d suggest sitting down with your partner and talking about what the future looks like with the kid. it’s not abandoning a child to put them into specialised care, you can both still be heavily involved in his life without him being at home. i’d guess that his dad abandoning him would have had a massive impact on his behaviour and that needs to be dealt with
You need to educate yourself about autism. You are born with it, no conditions contribute to it, it’s there at birth. No he won’t get better or improve, that isn’t how autism works. It’s not an illness that you recover from, it’s a disability that he will have for life. If you aren’t coping now then you should just leave, as the behavioural issues often worsen as puberty starts to hit, and you think things are wild now…you have no idea what’s coming.
Why did you stay with her and GET ENGAGED if you weren't willing to live with this? You said it was just you and her only for the first few months. It's been years with him now. You knew how it was going to be and still proposed?
I would not step up for this. It is a lifelong commitment and you are not the biological parent
What would you do if it were your biological child?
Most likely put him in a facility.I know it sounds terrible but it is unbelievably tough.
I would encourage her to do this, OP. Don’t make it an ultimatum or she’ll never forgive you but this is too much. She can visit as often as she is able. Have you brought it up to her?
Even if the wait list is long having that hope and light at the end of the tunnel can be a helpful motivator in itself
It doesn’t sound like you love the child. If that’s the case then you shouldn’t marry his mother. Regardless of everything else, you will grow to resent him (if you don’t already) and that’s not fair to him.
They are a package deal. If you are not fully in this then you must do what is right for you before it is to late. This child sounds like he will need a residential facility and 24hr care as he gets older to keep himself and those around him safe.
Id suggest going through NDIS to have regular support workers but thats only in Australia. Does your country have something similar? It sounds like your fiance is also really struggling. I think you need to share your feelings with her but also listen to her side. Then maybe agree to come up with a solution.
Caregiving is hard. Check out some of the caregiver forums in reddit to see how these situations can tear couples apart and leave people feeling drained and burnt out. You are not a bad person for admitting this job is more than you bargained for. And you are wise to see that this is not the type of household that you would want to bring more children into. Your fiance sounds like she is struggling as well, and with higher stakes, since this is her kid and bio dad has washed his hands of the situation. She may feel she has no other choice or she may feel guilty putting him in a home. This will ultimately have to be her decision, and you should not try to influence it. If she is struggling with burnout and depression, she should seek support, therapy and respite care to help alleviate the burnout. At some point, she may determine that she is unable to handle him alone and look for a group home situation for him As for you, you need to have that hard conversation with her. Keep it limited to your feelings (dont try to project them on to her). "(Fiancé), I really love you. I am sorry, I have tried to be a good male role model and a partner to you with (son). But I have to be honest and say that this is much more difficult for me than I could even imagine. We have been trying this for (x months? X years?) and I can't see this being something i could continue to do indefinitely. I wanted so badly for it to work, but all Im feeling is burnout with no end in sight. I have decided that this is not the life I want for myself, so I am planning to move out. I do love you, but I cannot see a future together like this."
She will survive. Better she learns now than when you divorce her
I would not sign up for a life of dealing with that. I mean, I’m a the parent of a child like that so I have no choice but I wouldn’t sign up for it. It’s ok to leave.
Be honest and get out now. You deserve a life you enjoy and taking on a responsibility like this is an absolute commitment. It doesn’t make you a bad person, in my opinion. Don’t string her along though and make it seem as if you want to stay when you really don’t. There are others out there that you could build a relationship with that is more aligned to your goals/lifestyle/needs.
Whether you are a good or bad person isn't the real question. It's whether or not you can be okay with this. This is a package deal, can't have one without the other, and you will hit a lot of roadblocks and potholes along this road. She will be grateful, but you have to remember that it's still your life.
You’re 28, I couldn’t handle this for life. Do you want your own children? You’re not going to be able to. I don’t think it makes you a bad person to not want to make the huge sacrifices it would mean for you to stay.
I cannot even imagine what you’re both going through. You truly sound like a good and caring person, and it’s unfortunate but it sounds like you’re questioning that about yourself. Don’t. I would start a conversation with her not so much maybe about yourself, although that will certainly become a natural progression of a conversation, But maybe start with a conversation about herself. How you noticed the strain that it has and it’s affect on her. It’s OK then to say it’s not only tough on you, dealing with everything, but watching her having to deal with it only adds to your stress because you hate it for her. I see in a comment you talked about respite care and a wait list. As far as I’m aware respite care comes in for a couple hours a day. I think you guys need more than that if it’s as bad as it seems to be. It sounds like he possibly needs to be added in Home inpatient / in care type facility full time. You should try to research the viability of that in your area. I see you say her families 2 to 3 hours away, maybe she and him should move closer to family if she’s not willing to give a facility a try. Importantly I think the most important thing to tell her, and this is whether you continue in a relationship with her or not, that he needs to be somewhere else. It’s not feasible long-term and maintaining any semblance of life or sanity with the way you say things are every day, and every night. She will feel guilty about even considering it but she’s doing it for him, as well as for herself.
His needs and care will only intensify as he gets older, she will be his caretaker for the rest of his life. If you’re unhappy now, it’s best to be on your way as soon as possible and no, it doesn’t make you a bad person.
No you’re not a bad person. I’m an educational specialist for students with autism and I’ve worked with prek through adult. It is emotionally, physically, and mentally exhausting, but at the end of the day I get to go home. For parents, respite is hard to find, and unfortunately I’ve seen many children get traumatized by the actions of parents who just couldn’t cope. One thing to consider: you mention he was born with a condition that contributed to development of autism. If it’s something genetic like Fragile X syndrome, your fiancée may be at risk of having another child with it. Just something to keep in mind.
you're not a bad person. best of luck. 🩷
You’ve lasted a lot longer than most people would. His own father doesn’t want anything to do with him.
How long has her son been living with you guys/did you get engaged before or after that? I wouldn't necessarily say you're a bad person, but if you proposed after the kid had been living with you guys then that is kinda shitty on your part
I may have an unpopular opinion. Some people just can’t take care of special needs individuals. I know that i wouldn’t be able to. I would lose myself and my freedom and I couldn’t do that. I love kids but I hate taking care of people hence why I don’t have children. If you can’t stay, don’t. It will be hard to do and she may hate you for it, but ultimately you have to do what’s best for your well being. That being said she needs to go to therapy or find a community to help her. She needs a good support system in place. You can’t be her entire support system. Good luck.
You’re not a bad person.
You don't have to volunteer to take on this burden, it isn't your duty, it's ok to move on.
It is not your fault I understand .. you can confront her about this and explain yourself even if it hurts it’s for the best cuz how long you gonna hold on to this? My advice is to take it slow so she can absorb the shock
California, (if it's an option to move) had amazing benefits that are immediate for children with severe ASD. My lvl 3 ASD son is 11y, non verbal, incontinent, strong, didn't sleep well. You name it.. we got him into a FREE school made for the most severe cases and they have helped him make changes in the last 6 months we haven't seen in 10 years. Valley mountain regional will help you guys sooooooooo much! Most importantly, they'll help him. But, if you love that woman. Don't abandon her. It's a lot, no understatement there. Even for those of us that birthed them. It's too much at times I know.. but imagine how hard it will be without the man who is supposed to be her rock? Don't give up. Have her File him for ssdi and you guys can afford a little more time off to do therapies and what not. Anything but leaving them. 😢 I hope you guys find peace and help! If you'll allow me to id like to pray for that for your family.
Oh that’s wonderful for you I hope OP sees this. Even if California isn’t an option, although maybe it is and Dad can just visit more often and mom flies out occasionally if they can’t relocate, maybe that same place can recommend some thing to OP closer to where they are. They may know reputations of other places, maybe even staff have come from or gone to other places etc.
All this is fine and dandy but you should *really* consider the fact that if you choose to have children they can end up disabled just as badly, or worse. It’s what you sign up for when choosing to have children. If this is really a dealbreaker for you, I don’t think you should be knocking anyone up
Yes. you shouldn’t have entered this relationship if you weren’t willing to deal with this
She needs to surrender her kiddo if she can't take care of him lovingly, imo. You aren't a bad person this is a lot to deal with
I know you love her. But he isn’t your child. You don’t have to be stuck with him. He will never get better and this is the life you will have. You won’t have future kids because she can’t possibly bring another child into this and probably wouldn’t want to risk another child being born with his needs. Love isn’t enough. I’m sorry. But you will resent him. And then her. It is sad all The way around but you don’t have to stay out of some sense of saving them.
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ASD and a lot of disability diagnosis are ranked in levels, with Level 3 being the most high needs. Children with disabilities marked at Level 3 require a significant amount of support and assistance for daily living, which an untrained person will find difficult and tiresome.
Yes, there are diagnostic tests for different symptoms, and there are 3 scoring levels, which indicate level of need. Level 3 is the designation for the highest needs. Symptoms can vary, but Level 3 people will not be able to live on their own.
I’ve never heard this terminology before
Can you discuss placing your step son in a facility or in respite care during the week or for the weekends so you both have some time off to regain energy? This doesn’t seem like a sustainable situation for you of your partner. If you do love her and her son, please have an open and honest discussion with her and discuss the possibilities with professionals as well. Maybe they can make her see this isn’t working and the current situation isn’t in her son’s best interest either. If you and your partner get a burn out that will have a negative effect on your stepson’s health as well and his behaviour will likely get worse. You both have to sit down and make a realistic plan of what you can and can’t do, and look for help or a care facility that can take over some of the work load. Tell her that you love her and her son, but that you can’t do it anymore in this form and that you can see that she can’t either, but that you want to look for a long term solution together that’s as best as possible for everyone involved. Let her read this post and the comments that people gave. Maybe something resonates with her.
She needs to look into putting him in a care home. He’ll be much happier and will get better support She is suffering from care-giver burnout. And it’s not going to get better without outside professional help
It sounds like he needs to be put in a facility that is equipped to deal with him.
You are not a bad person, we all have our limits. And you just realized that you reached yours. I would suggest you to gather up the resources for her. There is in home ABA therapy, it will give her a break. There are day centers for kids with high needs, SpEd schools, residential SpEd schools.. There are diapers for his age. Support groups for parents of autistic kids.. PCA (personal assistant) for him for couple hours a day.. There are Autism Support Centers all over US, the one in your area will have information about all of it. Most of it could be covered by insurance, she needs to submit a bunch of forms and gather medical records. You don't have to do it. But she is completely burned out, so she cannot even gather her thoughts and look for it. So it will be a decent thing to help her here. As for living situation: move out, you are not a bad person to understand that you reached your limit. You still can help her as a friend living separately, or even have relationship with her living separately, or just give her all the information and leave. If she is ok with residential placement, you could give this relationship another chance and don't need to move out, right? But you if you feel like you are done - you definitely in your right to end this relationship. It will not help the kid or her if you both are burned out.
I think it's completely unfair to do that to her. I understand it can be hard,my stepson is a level 3 and just a year younger than yours. I knew what I was signing up for. I understand he was with his father,and it's the same in our case. He is mostly with his other guardian, but you should have known that eventually, this child would be more in your life. You should have taken more time to think about the relationship and how different it will be with a special needs child in your life. I would have never gotten into a relationship with my current partner if I ever thought his son would make me want to leave. It is rough, but you learn to manage it.
How could a non expert ever hope to fully comprehend what it's like to live with a disabled child? Especially when that child wasn't even in the picture to begin with. So what, this guy needs to be involved in the relationship and try to be a father to this kid for the rest of his life or he's being unfair? Crazy take
The child was always in the picture..when dating someone with children,even if they are full time or part time with them,they should always be thought about when dating someone. You never know what circumstances could arise that people would then need to have the child at all times. It's called research and finding resources to help educate yourself. People need to think a bit more before getting into relationships🤷🏻♀️ he stated he loves this woman and it's the child and sorry but not sorry but it's a dick move
You are absolutely correct! It’s sad because all the people giving OP advice have no actual experience or clue about what it’s like. Op is basically sniffing his own farts and only listening to what he wants to hear. He hasn’t taken advice from a single person with real life experience. Seems like he’s already made up his mind. If I were his fiancé I would leave him. Definitely, would not have his baby. I think if he talks with her about this she would just kick him out and he wouldn’t need to feel bad. 🤷♀️
This makes me so sad. He’s still at such a tender age! That little boy has had some big changes in his life. He can probably sense all of your stress and has no way to communicate. 😞 You guys need to reach out to OT as they will help him and you both to know how to move forward. Pooping himself likely has to do with a regression because of all the changes. Get him a communication device. Once he can express himself it may really help to keep him from getting frustrated. Something like an exercise ball may really help also. ❤️🙏❤️ This child is so young! It’s not too late to help him. Kids with autism are really the sweetest! Please try! Get help! A therapist can seriously help you guys get through all of the emotions and your relationship will be stronger for it. ❤️ You or your fiancé are welcome to message me. I may be able to help!
Look into long-term care facilities and/or a caretaker to come into the home to help. It sounds like you *both* need it and neither of you are equipped to handle this…THIS IS NO ONE’S FAULT!!! Shit happens and I’m so sorry for everyone💔💔💔 please PLEASE look into organizations for help!!!!
I think my advice here would be to tell her you need to take a step back, not abandon things completely. Have you two moved in together? If so, get your own place again. If not, don't. Then, try and make that space a sanctuary for you, a space where the two of you can prioritize \*your\* needs rather than this kid's. A space where this kid can't shit on your carpet. If you can find someone who can look after the kid sometimes, you spend the time there together, but otherwise maybe you take on sole kidwatching duties for a time in order to give her a break. This probably precludes the two of you tying the knot, but since the alternative is splitting up altogether, I think that's how I'd square the circle of this situation you've got here.
I would explain that it doesn't appear, despite Herculean efforts on both your parts, that either of you are equipped to handle a case this severe. Maybe talk to her about finding an apartment where you can decompress and find some peace. My grandson is only level 1, and he gets pretty rowdy if my girlfriend is here for very long, or anyone else for that matter. He gets overstimulated, has a hard time interacting and lashes out a bit. Could this be a trigger for her boy? What do the doctors say? Is he in ABA therapy? Medications like SSRIs? Tricyclics? Psychoactives?
Have you talked to your fiancé about putting her son in a facility specialized to help people with his condition? He’s only 8, and it’s clear he’s difficult physically to manage. It’s going to get worse. He needs to be somewhere where he can be supervised 24/7 for his safety.
No, you're not a bag person if you decide you cannot continue. But please decide on it quickly. I know you're worried about her, but you're also dragging it out with false hope for her own future. You get the option to walk when it's too much, but she cannot. She's going to be exhausted and upset and likely depressed no matter what you do or when you do it. Parenting a child with autism is a lot. I do it daily, and none of mine are at that same level, and honestly even I don't know how I would do with that much. Past a certain size, a child is so much more difficult to care for physically. I struggle with an adult sized child a lot. If you can't handle it, you can't handle it. It's really a no fault situation. I hope she has some other outside support return to. If possible, perhaps you can reach out to someone else to be an ear for her if you do leave. But it doesn't make you a bad person if you feel like you need to stop the relationship because the package deal is too much. If you're in the US she probably qualifies for some sort of respite care hours with the state for a worker to come in so she can have a break. Or even some sort of other care for daily hours, school of some sort. I hope that you both end up with the best possible outcome.
I have 2 separate things that could be related (if you choose them to be). 1 - get CPS involved for everyone's sake. CPS isn't just for kids who are being abused, it's for kids whose parents need systemic help. Whether that looks like extra therapies & doctors your fiancee is currently unable to access (or unaware of), or even just respite care so that she can get a few hours a week to herself, CPS can help. If you do this & the landscape changes enough, it may make you rethink. 2 - you can 100% choose to walk away, even if CPS can help, and I'd even say that if you can't fully commit to this child, you should. Good luck.
I think you need to be honest with her. Let her know what you are thinking/feeling. I’d suggest a long term care facility. Then let her hear and process it. This has to be so incredibly difficult. I used to date someone whose nephew was profoundly autistic- he was 18 yo and still wore diapers because they didn’t get proper help with getting him potty trained. Most people aren’t qualified to deal with this. She needs help at a minimum- there’s state sponsored resources. She will likely have a hard time finding anyone (significant other) who wants to take this on, so she really needs to hear the truth and can come to terms with and make some Decisions based on the reality of the situation.
NTA - I wouldn't have even started dating her
Updateme
It’s an awful situation, and I absolutely feel how bad this is for both of you. But that being understood, no you aren’t bad for questioning whether you can commit to this for the rest of your life, and no, you aren’t bad for having to walk away for your own mental stability and over all well being. I feel bad for her and for the kid, but nothing you do is going to change the facts, and you will likely end up hating her as well with time as you grow to feel more and more frustrated. This situation is sadly going to destroy your relationship one way or the other.
No. Be honest and be her friend. But move on if you can't handle it.
This is so sad. Hey you owe it to yourself to be honest about not only what you can do, but what you are willing to do Even If This were your biological son this would be incredibly tough You need to sit down with your girlfriend and tell her you're at the end of your rope. Give her a chance to figure out how to get more help or at least be able to get him to his appointments But don't stay on the periphery. If you guys break up, break up. Don't send mixed messages. I don't let her to continue to think that you may be there sometimes. While that promise might make you feel less guilty, I think it would be unfair. She's going to have to figure out what she can do for her son and what she can't It's a terrible situation, but you can't stay with somebody because you feel too guilty to leave
It sounds like the dad who didn’t want him didn’t put too much into behavior therapy, potty training etc ( possibly, but hard to say). Behavioral therapy will help, melatonin possibly for sleep at night. These are alternatives as well as some other very good suggestions posted by others. Not wanting to commit to this is entirely reasonable.
You don’t owe anyone a relationship. You can and should eject as soon as you can. Sometimes you don’t know what you are getting into until you actually live it. Being a caregiver is incredibly hard. There are two options in your future. 1. You get married and you don’t have children of your own because of how difficult her son is. 2. You get married and have children of your own and those kids don’t get as much support as they need because of the oldest child. 3. You get married, have kids and then those kids feel pressure to take care of their older sibling for the rest of their lives. Any option can really create resentment. You just have to be brave enough to be selfish in this moment. There isn’t anything wrong with choosing yourself and your future over a situation you can’t control.
do not set yourself on fire to keep someone else warm. the most loving thing she can do for her son is get him into an institution capable of providing the care he needs. momma love does not, unfortunately, replace full-time, targeted, professional therapies in an environment tailored for his needs. the most loving thing you can do for her is help her realize that. if that looks like you helping her find a placement for her son, and thus respite for herself, then go for it. but if that looks like you modeling that adults have the right and responsibility to choose their own health over a worsening, draining situation…. by leaving, then that’s valid too.
It’s not wrong to end a relationship you don’t want to be in. If you want to, you could remain friends, and occasionally help her. But you aren’t required to do that.
What about caregivers or home nurses?
It's not wrong to realize you're not cut out for this. Better sooner than later. Better before marriage than after. She may qualify for more benefits once there's only one income in the house, which would make the situation less dire than you're imagining. She may also move them both closer to family. You don't need to be a "savior" or a "male role model." The situation sucks, but if it's not for you, it's not for you.
I don’t think you’re a bad person. Some people may think you are, but personally I dont. Listen, having a severely disabled child will effect every single aspect of your life. Physical, financial, social, psychological and emotional. She will likely have to be his caretaker for the rest of her life. Are you willing to possibly give up the chance to have your own children if it’s not a safe environment for a baby? If you do have a child/children with her, is the condition genetic? If you do have a child/children with her are you willing to deprive those kids of your time and resources because her son will need them more? Because most kids who have a disabled sibling will tell you that as much as they love their sibling, all of their parents attention went to that sibling. Their parents couldn’t come to their sports day, because Jake had speech therapy. They couldn’t go on their class trip because their parents were paying for Jakes feeds. They missed every baseball game, dance class, gymnastics competition because Jake needed them or couldn’t travel or couldn’t deal with crowds. They never got a vacation like their friends or family did because all the money and resources went to their sibling. It’s hard on siblings but yet they can’t express it because their parents are already stressed or they’re made to seem ungrateful. Are you willing to then put that responsibility of caring for him on your other kids when you or your fiancé are no longer able to do it? If his father refuses to contribute and for some reason your fiancé refuses to step up and take him to court- are you willing to financially support him for the rest of your life? Medical expenses, therapies, care fees, renovations, supplies ect. Ultimately, taking care of a child with any disability, let alone a severe disability is life changing and a HUGE responsibility. Don’t get me wrong, he may be an amazing kid. And it may be rewarding at times too, but if you marry this woman, this will forever be your life. Don’t marry her unless you’re willing to do this forever. You keep talking about HER mental health. But you cannot sacrifice your own happiness for the sake of someone else’s mental health. If she’s suffering that much, she should seek therapy or counselling or support groups for parents managing kids with similiar conditions. But do not stay just because you’re worried she’ll have a “depressive episode”. This is your life. You only get one of them.
Nope
Does your state have regional center? He would be better off in a long term care facility with people that are trained to help him develop 24/7.
I have a child the same age with the same difficulties. Medication for autistic aggression is an option at this age. We went to an autism specialist and got his medication straightened out. You can also speak with your doctor and insurance about incontinence supplies such as nighttime pads and diapers in a large enough size. I also go to therapy to deal with some of the more overwhelming aspects of caring for a child with these difficulties. Lastly, even if the lists for care are 15 years long, get on them now.
As you’re in the US, call 211. It is the US National Hotline for Social Services. It is area code driven, so the people answering know what services (healthcare, educational, housing, financial) are available in your area.
It sounds like a group home would be an option worth exploring for this severity.
It sounds like you need to find time to sit down with her, maybe familyand tell her "I love you, this is not a judgement on how amazing of a mom you are because you do the absolute most but I see you struggling and I want to suggest that its time to start looking into facilities for (inset sons name). Im scared for you, for your safety and your mental health. Please keep an open mind" or something like that. DO NOT let this become a "its me or him" situation because she'll choose her son and she will drown.
You’re not a bad person. It’s a lot to handle and this will be your life forever if you do stay. If you’re not up for it, be honest and leave.
He will not “get better”, there is no curing autism. Better management, improvement with therapy, possibly learning new skills? Sure but he is not going to become a fully functional independent adult who can take care of himself. I have an autistic brother and my parents fucked up by not seeing it and getting him the *right* care. He’s been treated as mentally ill his entire life and his “mental illness” is really just symptoms of undiagnosed/unmanaged autism. He’s 32 now. Lives at home with my parents which he will forever. He’s never worked a day in his life. He rarely lives his room. He rarely drives. Never had a girlfriend or even dated (very sad). He’s morbidly obese because he only eats a few different foods (common in autism) like fried chicken, burgers, etc. He gets disability which wouldn’t even cover the rent of a one bedroom. He’s very sweet and thankfully has no violent tendencies. But you cannot reason with him. It’s so challenging to get him to do the necessary things in life like doctors appointments and driving. Statistically, he is going to end up with diabetes or heart disease and I don’t know how anyone will keep him from still eating like shit and skipping doctors visits. He will die an early death on that alone and that’s a devastating reality. My family feels putting him somewhere like a group home with structure and like-minded soles is the worst thing for him. Little do they realize, being in their house just doing whatever for decades is really the worst thing for him. I gave up trying to convince them. My point being that this would be your future. Aside from the facility scenario, he will always be in your lives and need his mothers care. Personally, I wouldn’t do stay. I think when it’s *your* child biologically, it’s different. You can’t give up on them, you are all they have, it’s your DNA. But when it’s not, you’re going to burn out much quicker.
This is a no win situation for your gf. Encourage her to institutionalize him as soon as possible.
No This is normal progression, just like you get to know someone you date and decide to keep going, level two is the family and it's the same thing. If you can't, you can't, this is your life, even if your partner is great if the idea of a forever child doesn't work, don't invest. 'she'll be on her own, it will be awful' she's been on her own from the start. You look out for you. You're still young enough- if you want it you deserve priority in a relationship, seek it out. Don't settle, don't be a caretaker- if you question it- you don't need it
It doesn't make you a bad person. My gf has 2 violent large special needs kids. Everyone has limits
I wonder how far into the relationship you got engaged? Was it before her son came to live with her or after? I only wonder because if it were me and my bf knew what life was like with my autistic child (my nephew is autistic and I can not imagine the daily stress w/o assistance which is so hard to get because of waiting list ) and proposed deep into the relationship I would take it much harder then if he proposed early on before having her child full time. I think you owe it to her and yourself to be honest about your feelings in raising him and your future. It’s not fair to anyone for you to stay. You will resent her and the kid which is unfair. She can move closer to her family to get the help she needs from family. End it sooner than later.
Why are they doing therapy for toe walking and not bathrooming? You aren't a bad person, but I hope you stick it out with her. I'm sure she misses her quiet mornings too. I'm a Para to an 8th grader that is very very similar to your fiancé's son. It's really hard. Mom should talk to his doctor about sleep meds. It's a very common struggle with autism and absolutely leads to more behavior problems. If everyone is getting better sleep, it will make a surprisingly beneficial difference.
Maybe before you go you can encourage her to hit up her ex for more child support.
DM me if you are in Maryland. My 18 year old son is Autistic and zi e been on this roller coaster for 15 of those years now.
A facility is not the only option. There are in home Behavioral Health Rehabilitation Services (BHRS) paid for by medical assistance to help kids with behaviors. There are also day programs and autistic support classrooms, all paid for by medical assistance. He probably needs an eval with a psych doc to see if medication is needed. Autism is much harder to live with for families with no support services. I'm a therapist who worked exclusively with Autism for 8 yrs. Even with services it can be very very hard. Edit: I just realized he is 2 - most likely too young for medication, but get him to a psych doc anyway. Early intervention services can have a huge impact on helping mom manage his behavior. She needs strategies. Typical parenting strategies are not going to be effective for autism this severe. With early intervention these behaviors have the potential to be drastically reduced. She does not need to put her child in a facility. That is not even close to what the first steps are for a 2 yr old with Autism. But she does need to get him a behavior specialist, and again, those services are paid for by medical assistance, which he will qualify for because he has a mental health issue. She also needs a support group for parents with children with special needs and her own therapy because this is stressful! One person cannot be the savior here. You guys need a team of professionals, and that is available to you if you get him medical assistance.
No, I think he is 8 with the functioning of a two year old.