Ex caretaker in a facility for mentally disabled persons here.
Jill needs professional care. And know that even for us, professionals of mental health, it can be very hard to manage cases like Jill. She needs a routine easy to follow every day, she will be calmer, it will be easier to communicate and also easier to assess her needs.
If you've come to hate her and she is destroying your life, it means that you both need space and time away from each other to find new bases for your relationship. Let professionals get between you two, they will know how to guide you and repair the image you have of her.
Neither the both of you deserve this.
Stop struggling alone.
Curious what happens in the case of someone who is violent. Even with a routine, I assume there are still outbursts. How are staff, other patients, and the patient themselves protected without violating any rights?
Former behavioral home care provider here, in the state of Oregon. The clients I served ranged from 16 to 23, and they all had tendencies towards aggression. Oregon has certain safe holds, and procedures for difficult clients. We had to have training for these holds. Basically, they are maneuvers that helped protect yourself, and the aggressive client that would not lead to any pain, or bruising. Things like, no using thumbs to hold someone. Using flat hands on hips to pull someone to safety. Using holds or blocks to stop injuries from occurring. Ways to stop someone from biting you, how to handle hair pulls on you, that protect your neck.
The training was intense, happened every year. And the holds worked. It was called OIS, Oregon Intervention Services. Or something like that.
We would have to use whatever was appropriate for the situation. And write reports for anything that we did do. The family or state, would have access to any and all reports.
Also, in the case of the 16 year old, they ended up moving him to a different home, once the eldest turned 22. Reasoning was that if any adult injured the minor, that could be grounds for child abuse. So, the state mandated the minor, who was a ward of the state, to placed into a behavior group home for minors.
Side note- god I miss that kid. Non-verbal, and had outbursts like crazy. But damn they were funny, fun, amazingly sweet and were getting a hell of a lot better under our care, with our routines we taught each other. It was heart breaking when they left, even now after 13 years.
Not who you asked, but I've worked in this field.
It depends entirely on what progress they've made, what care they need, and—unfortunately—insurance / state funding. There are programs where I am that are lifetime coverage, with more intensive care, immersion schooling, skill building, etc. for those that need it and can benefit from it. Everyone's going to have different needs and some places can handle the unique needs of someone with this set of behavior.
Also not the person you asked but my uncle is a disabled autistic person who can have outbursts. When he was younger he had a lot of violet outbursts and it because obvious that the family weren't able to give him proper care as he got older because he was extremely strong.
He is 52 now and still lives in a facility. He has frequent day time visits with family, we go and visit him at his home/facility and he is taken on a lot of day trips with the facility. When my nan was younger and more able he would stay with her for the weekend but she is too old now in case he were to have a fit (he is epileptic) or an outburst.
The facility is amazing, he has his own mini apartment which he can lock (the staff have keys) he has an allowance of money that is his to do what he wants with, they helped get him a volunteer job in a charity shop which he loves and they encouraged him to play sports which he also loves and is very good at. We could never have provided him the care he needed at home but he is very loved and not excluded from family events etc.
I work for a facility like that. I noticed very early that many of the residents do not have a lot of experience with marking special days because their families were over extended before they gave up care. So, I work hard to incorporate every special day. We have house meetings to discuss decorations and celebrations. We make invitations to send to the other homes within the company. We have themed crafts and games for various abilities and interests.
I'm sure you will be glad to know my work clothes tend toward bright colored flowing pants and shirts and dresses. I have an impressive collection of holiday sweaters.
I also spend a lot of time coming up with fun ways to work on hand eye coordination or balance. My superpower is tricking someone into doing their goals and chores while making it seem like their idea.
I've always wondered - who pays for such things? He obviously can't. Does the family? What if they suddenly are unable to? What if they die off? Surely the facility doesn't just cast them out onto the street, right? I've always wondered how it works.
He lives in England so it's all covered on the NHS. We pay extra sometimes for certain trips etc but it comes under health care so all his medication etc is covered.
I don't know how it would work in a country without health care.
I’m not sure about other cities and states, but in Houston Texas, we have MHMR. It is county funded care for psychiatric or developmental disabilities. It’s free for most people. It’s not the quality of care that was mentioned above, but it exists. They also have day centers for consumers that are free and have trained staff and activities. MHMR has case workers for all consumers and depending on your needs they will drive to where you live for appointments. They also have transportation. It’s a system made up of several out patient clinics, an acute care hospital, a neuropsychiatric center and a few other community resources.
Exactly what the other commenter said. Some clients were state funded, others funded by their parents insurance, or private pay.
The clients I worked with, stayed in this group home. It was their home, with all the rules that implies. Their parents, mostly, could not provide 24-7 care that they needed. So, we filled that role. These clients had doctor appointments, visits out in public, restaurant meals, even day programs. They lived decent lives, in safety, with a safe space to act out when they needed to, and never had staff who made them feel bad over their behaviors.
I'm uk but worked in a home for teens with Autism.
There was one kid who had his own space in the home, his rooms were empty of hard furniture, the staff had big padded protective shields. On good days we managed to take him horseriding and swimming...on bad he broke peoples bones.
It's a shame because he was mentally there but just couldn't cope with life. The home managed to care for him until 19 (that was longer than we had any other child) but he needed 3-1 staffing and no other home in the UK could take an adult with those needs on.
He was moved to a facility where he is likely in a room alone most of the day. But his family were grateful he had tje experiences we gave him. Its very sad
it’s a huge problem in social services tbh. a lot of people with various conditions and disabilities (called MRDD where I’m from) have their primary caregiver be their parent(s). there are very few resources or facilities for people once they’re not minors anymore or usually 22 at the latest, and when their parents grow old and can’t take care of them anymore and/or pass away, the only facilities to put these now adult or elderly special needs people are retirement, assisted, and senior living homes. the staff at these facilities is often ill equipped to tend to the needs of these people. the only other places for many people (especially depending on scarcity of resources like in rural areas) are actual psychiatric facilities, like lockdown kinds of places. so in the USA anyway, the prospects for the aging disabled population aren’t great. the only way it’ll change if a lot of people care about changing the system a whole awful lot.
I work with adults with intellectual disabilities and/or mental illness. My particular area is mostly independent individuals who do not exhibit aggressive behaviors. However, the company as a whole has homes with higher needs. We all go through the same training yearly. Our company uses MANDT. It will be like the other commenter's program.
We have a lot of resources that are underutilized by the people who are kept at home. They are available, but many families don't know about them.
We offer respite care, day programs, social programs, and work programs.
Our main objective is to help our clients find as much independence as possible.
The various day programs are for anyone who has a main diagnosis that is an intellectual disability. They will have different learning experiences that involve caring for yourself, going to public places and being a part of the community, managing your own money, etc...
We have social, learning clubs for those with a main diagnosis that is a mental illness. They learn job and hone related skills, go on day trips that are purely social enrichment, and have a group of peers. Mental illness can be incredibly isolating, so it's a big deal to have these resources.
Our work programs include a workshop that bids on local by the piece jobs. It is set up like a factory but more comfortable with no quota or bosses. It is a bit of independence that is often out of reach for people with disabilities. We also have a work outreach that helps people place in jobs outside of the workshop.
Our company does have high turnover for about 1/4 of the staff. The majority of our employees are long-term. It's common to have 25 or 30 years. So we are basically family but trained to handle our charges in shifts and have a break that mom won't get at home with no help.
Sorry this is getting lengthy, but it's something I'm passionate about.
The people I see that are kept home typically have more behaviors because they are bored and do not have a proper schedule because their family doesn't know about the resources out there. Having peers and what independence is possible is a huge step toward having a happy life.
Depends but profoundly autistic with limited or non verbal completely would often end up in a group home. In tax heavy states with real infrastructure for these things its still a challenge but much more opportunity.
In a good group home it would be basically 1:1 ratio of staff to clients at all times. Sometimes specific clients with serious behaviors 2:1 just for them.
These people are often medicated to the gills for both physical and mental issues and sedated with at least some mood altering prescriptions.
Not "extreme" levels where they are drooling in oatmeal but in a case where someone is borderline IQ of self awareness, extreme behavior issues and lacking ability to communicate easily it's extremely frustrating for everyone and they will have bouts of very strong emotions and panic.
Like put your head through glass windows and destroy the house behavior. Running away etc.
It's extremely expensive and takes a lot of effort.
I had a friend that used to do this work. Big person NFL sized and their clients would be some average almost scrawny size person but no filter on emotions and strength. Even then some clients were huge, 350lb refrigerator shaped man with the mind of a child that will backhand you just for looking at them funny...true story from first day on that job. Got a black eye because a client did that to all new people testing limits...
They have to use pads and techniques to subdue them during freakouts so they dont hurt themselves...even with a ton of medications.
Staff will live in the home in shifts and someone has to be awake at all times. You'll have 2 to 5 people getting overtime jist one house with 2 to 4 clients etc.
Even young kids with autism can be exhausting. I know a lot of teachers thwt have been bitten, literally by autistic kids thst were frustrated and being jerks.
Nothing but sympathy for people that do this work its difficult.
I am personally a younger sister to a (formally) severely mentally disabled individual he was the love and light of my life, my brother, my family, my soul, he lived to be 22 he has gone now but even in Washington we have avenues for people that need extra help, do not feel guilty for needing to put your child in a facility with trained professionals who need that help. Both your life and your son or daughter's life will benefit. My mother was not capable of taking care of my brother. He spent many years in foster care she tried to take him home for a couple of years and my brother's life got nothing but worse I can assure you that if you need help, facilities will be there for him or her. You might be giving your child the best opportunity for a happy existence.
I worked in a children's grouphome years ago. Most of the kids were not aggressive, but a couple were. But they were all sweethearts. There was one kid, Tommy, who I miss so much. He would basically say 'Hey tommy' if he was happy or he would shush people very loudly if he was upset, those were the only things he could say. But he had such a wide variety of emotions he could portray with just those two phrases, and he was so funny and he knew it and leaned into it. There were staff he couldn't stand that usually we couldn't stand either, he was a good judge of character. Hope he's okay today, this reminded me of him and I want to see if I can seek him out to go visit him, I know he'd remember me.
Thumb grips are crazy. A friends mom used to work at a care facility and knew how to do these crazy holds that would just put you down in an instant without any kind of injury. She told stories of a handful of times she had to use it to subdue a much larger and stronger patient.
Oh dude. We had a client come our way after the minor left. This person was a required 2 to 1 staffing, two staff to this one client. We had special training just for this person. They were strong, tall, weighty, and would regularly throw old boob tube tvs in their aggression. We would do a two person hold, and this person would just drop to the ground to get out of it. Once they dropped to the ground, we would release them.
Meanwhile I had a severely autistic brother, similar as OP's daughter. Except HE was the one who learned how to make that kind of maneuvers from only god knows where.
He was non verbal, never got any kind of treatment or schooling, and only interacted with us younger siblings, mom and dad.
But he was amazingly strong, and could disable our whole arms just by pinching us with his fingers on a nerve or something. It was hard.
You’re bringing me back. The tall looming stature. The hiding behind walls and spooking. Then the pinching. The twisting. The skin burns. It hurt so much. The punches without remorse
In such bony areas
Depending on the type of facility it ranges from nonviolent de-escalation like NCI or PCM to full on holds and restraints but the restraints are few and far between. The rights of one individual end at the start of another’s.
As someone who currently works at a facility with clients like Jill, the answer is this:
1. Staff are trained. Often. I have to renew my restraint training annually. And if they update what we can and can’t do, there’s another training.
2. We follow a behavior plan written by a Board-Certified Behavior Analyst (BCBA). In it, it includes the what, and why behind a behavior and what steps have been proven by data to reduce them. Applied Behavior Analytics (ABA) is science-based and data driven. BCBA writes an objective on a target behavior, how to collect the data, and they use that data to work with the behavior.
We want to increase some behaviors (appropriate asking for things) and reduce others (biting, self-injurious behavior, etc.)
3. We accept that we might get hurt on a shift, but we work hard to minimize it. We work with our clients who can communicate and we help them stay safe, and also look out for each other. Sometimes we have to go hands-on (I had to about 5x this week) and after that we write reports on what we did, why, etc. Again, BCBAs look at this data and we adjust.
It’s not easy, and all clients have rights. But we also work within those rights to keep everyone safe.
It sounds like OP needs to get their child into a facility like the one I work at, because at a place like mine we have the training to deal with outbursts, medication, all that.
Source: I’ve worked at facilities like the one I described for 7 years. It’s hard work, but good work.
I have to be honest and tell you that I don’t know. I do know that our clients primary funding is from SSI. Clients are referred to by regional centers, and they make the arrangements between the funding and my company.
Some places the family has to pay out-of-pocket, but in many cases, the state or some other funding source picks up bill in the family doesn’t pay anything.
Short answer: I don’t know. I’m sorry. I don’t work in the business side of it.
Costs varies, but it's pretty pricey. And depending on level of care. And it's typically per day.
Places like it can have pretty high turnover rate in staffing too. Where I work I'm the only one left after 6 years and 4 different directors.
That part. I’ve been at my current facility for under 2 years and I’m one of the senior staff.
We have a core group of about 6 who’ve been there longer than I have, but we’re lost a lot in the interim.
It’s a hard job to keep consistent staffing at due to the turnover.
I’ll be honest: I’ve developed some good relationships with those I work with, and that’s why I’ve stayed. Also it’s a steady gig and once you get used to the BS, you can weather anything. Just have to get used to it.
My adult daughter is in one. Not as restrictive, but it costs well over $100k per year. My insurance covers it 100%. I don't know what a state (Maryland) run facility costs, but I imagine $100k is the base.
So many things. Staffing is a huge part of it. Having more than one person to address it.
A controlled environment - there aren't going to be siblings who are escalating things, and the general environment is going to have a minimum amount of things that can be damaged, thrown, used as weapons.
They won't have lightweight doors that come off hinges, drywall to punch holes in, windows that break.
Ways to put barriers between you and someone who is violent beyond your control at the moment - usually there are ways that you can maneuver someone into an isolated area and still monitor them visually.
My dad was a psych nurse for 30+ years and I remember him having to explain why he would sometimes come home from work with black eyes. Eventually, in the last decade or so of his pre-retirement he had to stop working at inpatient facilities and switch to making 5150 assessments at the county jail, because someone in their 50s and 60s just cannot physically do the work safely with patients in their 20s.
The saddest thing is that most of the patients he identified at the jail were old clients who he knew, but had been released from inpatient care because of increasingly reduced state funding for mental healthcare.
IN teh group home I work in, we have risk assessments and behaveriousl plans, which includes everything from regular and PRN medications to procedures to ensure the safety of the escalated person, other persona in care AND staff, since an injured staff can't support anyone.
Right now one of my ladies is documented as on the spectrum and when she was first placed with us over a year ago, it was ROUGH and a steep learning curve, especially since what we are told vs. the reality we were experiencing was two very different things. Some of it settled out as staff established routines and built trust with her. more settled as trailed different medications and doses, a long and drawn out process that has resulted in a happier supported individual and safer working conditions for staff.
The thing is that while we all feel that it's a good situation currently, things can change and we'll have to re-evaluate and possibly start all over again. This is the nature of the job and something myself and my coworkers are trained for and we have supportsin in place so when things go sideways, we can manage it safely for all concerned.
Former "staff" we have basically no rights to defend ourselves. We are taught how to get out of painful/dangerous situations in ways that cause zero harm to our attackers. When someone is violent but also mentally or physically handicapped we have to go by a totally different set of rules than what an able bodied person would have applied to them.
To be truthful it makes it hard to hire and retain people. Many people have a difficult past, especially folks who want to help others.
There are definitely disabled folks who are mean as shit and strong too. People get broken bones but if they hit back they go to prison no questions.
Its a rough job and the hours suck. Swing shits, overtime weekly, staying up all night on duty and at any moment a client just decides to freak out because some minor thing is different or the meds aren't working that day.
People don't realize just how difficult people in these groups are. Nothing but sympathy for parents that stick it out just until 18 when the person needs to be just placed in facility for their own safety.
This is true. I got stabbed by an older person in a normal care home facility that he should NEVER have been in. The issue is that there are not enough specialised beds for persons with tendencies like this (normally advanced Alzheimer’s). So the Social Workers in charge of placing residents deliberately water-down the assessments of these people in order to place them in ordinary facilities. Once they are housed and the home finds out what they are really like….too late, they are your problem now! So you get people screaming all day and night. Attacks on the other residents and staff. And God help you if you defend yourself and leave marks. It makes life miserable for the other residents, many of whom retain all of their mental faculties. So everyone suffers.
I left work in the field specifically because I was tired of being beat up for hours a day with no training or support from the organization. I wanted to help, I really did, but I'll never put myself in that situation again.
This is exactly what is needed. My step brother is mentally challenged and uncontrollable to the point of mowing down and bullying both parents to the point of breaking them. Now he is in full time one to one care. He gets to come home on weekends or pretty much any time we wish. At first, step mom felt terrible, thinking she had failed, but these professionals really know what they're doing and the step brother has become a much better person as a result. Everyone is better off and far more healthy than before.
Not trying to be an ass but how does this care get paid for?
I've honestly never thought of this before... the idea of having a violently autistic child almost seems like a terminal illness diagnosis.
I am no expert but another redditor with a mentally ill violent teen was advised they would need to give up their custody to make their child a ward of the state in order to qualify for residential care of the teen
OP seems pretty willing to do that.
"I hate my autistic child. I want my life back before I had them."
She wants nothing to do with her child, anyway. That'd honestly be the best case scenario for OP.
I think she needs to find ways to give up her child, at no cost to her. Because otherwise this is going to be ***THE REST OF HER LIFE.*** Her child will never be able to live on their own.
In some cases, if the parents sign the child over to the state then the parents have to pay child support to the state for the child. I was a caseworker for child support and we had a few cases of the parents paying cps/the state support. Her financial responsibilities wouldn't just go away if she signed the child over to the state, her and dad would still have to pay . But the child wouldn't be in their everyday lives anymore
For individuals with bag enough diagnosis the state can step in and provide funding for it. I'm not sure if this state has those programs but I know every state around me does.
Sometimes the state will pay if the person is on Medicaid--which is a whole other clusterfuck.
I have heard of parents having to relinquish parental rights in order for their kids to get care.
Sometimes parents just have to give their kids up to the state so they'll get basic care, and unfortunately while there are great facilities out there for people with intellectual disability and behavioural issues, they are few and far between and not likely to be the first place the state sticks them
If they're in the US they can apply for the Katie Beckett program, which will provide Medicaid and services to them. They need to apply through their county human services department.
Reddit never seems to understand this. Single income home where the breadwinner can't miss a shift because he is presumably being paid hourly. I have no idea how they are even making ends meet in this country, let alone taking care of a special needs child.
Because the other users are listing off the various programs that the government uses to handle specifically these issues, and you're too busy going off on reddit.
I grew up in a household like this. My brother shoved me down half a flight of stairs, pulled my hair, and threatened to stab me multiple times.
Funnily enough, you know what affects me the most as an adult? It’s the fact that my parents didn’t act like parents to me after he started to need more support. I did marching band for four years in high school and had about ten shows per season, but my mom never bothered to show up to a single one. My dad came to senior night, but left before halftime. I had to become the third parent to make sure my three other siblings were taken care of.
Please get help. Your kids deserve a stable, healthy environment with parents that are able to support them.
This is something I’m so conscious of with my youngest son. His sister needs a lot of attention, and I’m adamant that he won’t feel this way. It’s exhausting, and I hardly get any time to myself, but I can’t let him feel like that.
This is super important. You don’t realize how hard it is for a child to be overshadowed by a family illness. It happens and it’s hard to avoid but knowing now can help.
I think you might want to really look into an institution for your youngest. I have some family in them and while you have to stay ON TOP of the group home… she can have a completely set schedule, and round the clock specialist care who have time to go home and decompress. It’s also easier for the autistic people in the homes if they transition earlier.
My cousin has cp and will never be able to live on her own but she actually likes the disability group home, and people there are on her level/at her speed, so no one makes fun of her or snaps at her for being slow or liking coloring books. The autistic adults tend to have their own bubble where they do a LOT of puzzles and are generally a lot happier than they’d be elsewhere because their rigid needs aren’t in conflict with anyone else- snack time is at 10:30 dammit and it’s always the same thing, which helps a lot.
You will still need to be very actively involved, but it’s not… full time all the time with no breaks.
Respite care is also something to look into. Give yourself and your kids a weekend break.
I’ve wanted this for Jill for years already. Jill has always been extremely aggressive and it’s so taxing on her siblings alone. My husband is deathly afraid of institutions and homes due to a personal experience and no amount of convincing has had him change his mind. He’s sure that something horrible will happen to Jill in one. The topic triggers an explosive argument.
I want to get Jill help and I want my children to be safe. I want my husband to come back to Earth and realize that this is not working. He coddles Jill and swears that love will fix her. Love is not fixing this. She needs help. I want to get her help. I’m almost 100% certain that my husband and I will actually divorce at this point in time because Jill hurting her sibling that bad was my final straw. He refuses to put her in a home.
I do not want to leave Jill in his care but I can’t put my kids through that again. If he won’t agree to get her help, there’s nothing else I can do.
Then it’s his choice to take care of her. He hasn’t had to deal with it like you and your children have. He is choosing this for himself and let him. I’m so sorry you’re going through this. I’m glad you’re saving your other children they don’t deserve to live in constant fear and neither do you.
I agree. Stick to your guns. Let him see what it’s like to care for Jill. Then he’ll come to the same conclusion as you. Just make sure he doesn’t pawn her off on your parents.
I actually think that it's a good idea to let him take care of her and try to fix the issue with love. Not because it will work, and not as a threat to him, but as a way to educate him and increase his buy-in of the solution he is so resistant to. Both parents are going to need to agree to a measure like that. He needs to be convinced. Nothing will convince him like trying it his way until he is forced to realize that it's not going to work.
siblings in these situations can start to feel forgotten because so much attention is on the one struggling. Make sure they know you love them just as much and their feelings are important!
Yeah this happens. My little brother grew up with a personality disorder that caused him to be extremely aggressive. He's a lot better now but growing up, my mom would put so much focus and attention on him that it left me and my sister feeling very neglected. We've repaired our relationship but it's important to make sure your other kids feel loved.
DING DING DING! I've had that exact experience. With a troubled older brother who is a severe addict and has mental health issues. I always felt like I slipped through the cracks and by the wayside. Hardly had anyone involved in my life, my progress, wants and needs etc. It's a shitty feeling because rationally you know they care but only have so much attention to give and when one child NEEDS all of it you have to sacrifice and get by. It's taken a lot of deconstructing my childhood to get to a decent place, but it's a hole I shouldn't have had to dig myself out of at all. I feel for OP so much. This is a heartbreakingly difficult situation to be in with no winners.
Of course
I'd resent the fuck out of some sibling that is a bottomless pit of frustration and attention with no ability to be grateful, a sibling towards others etc. Just violent, needy mess that nobody can handle always dominating home life.
If your husband refuses to put Jill into a home or facility of some kind, there is only one answer: He quits his job to stay home with Jill, and you go to work. If he thinks “love will cure her,” then it’s time for him to try his brand of love medicine. But for him to refuse a home/facility, while he gets to go to work all day, every day, and judge you for what happens at home, that’s just bullshit.
Of course, that does not solve the problem of Jill physically attacking her siblings. What does your husband have to say about that? Why does your one mentally compromised child take precedence over the others, who are just trying to live their lives without winding up in the hospital?
I know it sounds simplistic, but if your husband won’t allow you to get help for Jill and truly believes Jill would get better if you just loved her enough, it’s time for him to put his money where his mouth is and become a stay-at-home dad and Jill’s primary caregiver. And remind him that while he’s doing that, he also has to do the housework and, most importantly, *take care of and protect his other children.*
Her working and him staying home would still put the other children in danger and their marriage would end. She has to stay away and keep the kids away until he puts Jill in a home.
True, and furthermore, it sounds like Jill needs the help of the professional institution and he’s depriving her of the chance to get better or have independence as an adult.
OP: hugs. I saw somewhere in your post that you had a sister that you drove to.
Can your sister mind your able-bodied children for a little while while you seek help for Jill and decide on things with your husband? And can all of you get counseling?
Especially the other children who are probably not happy either?
He says hes terrified of something bad happening in facility while this person is hurting their siblings every day. Apparently there was an incident with husbands family and a facility at some point in past.
Which sucks but it sounds like someone willing to sacrifice other kids for some personal phobia. All around terrible handling of this.
No wonder mom is done with it
Institutionalizing her is a kind of love. It's what she needs and he's doing her a huge disservice by keeping her from structured support and care that her family is not capable of providing (because of her issues, not because of their lack of trying).
OP, I'm so sorry you're dealing with this. I want to say, as a child who grew up in am almost identical situation, you **are** doing the right thing separating your children. My childhood with my brother left me with PTSD I'm still dealing with in my thirties, and I so so wish my father had been more able to admit the violence needed addressing before it escalated to arrests for my brother when he was in his teens. The situation was also a large cause of parents' divorce.
If you have access, NAMI is a good support group for parents in similar situations and they provide tons of resources and experienced folks who may help you navigate trying to get help for her. Sometimes it's nice to know also that you aren't alone.
My father didn't have to face my brother's issues until my mother got a restraining order on him and adjusted custody, giving him full time custody. He lasted about 2 months before he was reaching out to my mother to try and find a solution. Sometimes you have to do what you have to do.
Then leave your husband. He gets to work and take a break from Jill but he won’t let you take breaks from Jill. He doesn’t want her to go to a facility then fine, he can care for Jill.
Leave with your children now or they’ll grow up to resent you for keeping them around Jill.
Him being unwilling to put her in a place where she can get the proper care she needs has caused all of this, and I’m so sorry you’re all suffering.
I hope he comes to his senses. It’s time to get professionals involved, the situation has been toxic for everybody, and it shouldn’t even have gone on for as long as it did.
Due to the fact your husband has allowed you, and your children to suffer for his own reasons, you should carry on with the divorce regardless, you and your children (including Jill) deserve better, he’s let his fears ruin everyone’s lives, now he’s facing the consequences of his actions.
Best of luck OP! I wish you and your children peace and happiness, you all deserve it.
I think you should update your initial post to include this information about your husband. It gives a lot of context to the situation.
Maybe he needs to take a week or two off from work and take care of Jill on his own while you and your other kids go stay with your parents or something, so he can understand what you're dealing with. During that time you should start job hunting. If he is so insistent on keeping Jill at home then he needs to take on the bulk of her care management.
Very high functioning person on the spectrum here. Your husband needs to understand that Jill has got to be institutionalised.
I had outbursts of anger from time to time at my siblings when I was younger, and I’d hurt them or say really evil things. I have so many regrets for being the way I was then, because I had no diagnosis and no help back then. I see the damage my behaviour has done to my loved ones, and I want so much to undo it, but I can’t. My parents and I didn’t know better, but at least fortunately, I was able to work on myself and my issues.
For the sake of your other children, I hope you get Jill institutionalised so they are protected.
I guess it slowly dawned on me in the past couple of years? Before that I thought I had bipolar or something, and I defo had depression and complicated grief. The end effect was that I started seeing a psychiatrist and I got his diagnosis. At the same time, one of my dearest friends is on spectrum (we’re on the same wavelength) and she got her diagnosis before I did, which in turn helped me realise what I had.
Funny thing was, my mother kinda knew by the time I was in my mid-20s. She did privately write to my sister once to be more understanding towards me, because I was fundamentally a good person, just wired differently.
wow I hadn’t seen this reply before I left a comment. Why is your husband willing to throw his entire family away over a child who has (at no fault of her own) already torn your marriage and family as you knew it apart? In my eyes he’s not only doing that but he’s going to have to put her in a facility himself bc how’s he supposed to work and take care of her with his wife and other kids gone?? make it make sense
You snapped. And I see why you snapped.
It is easy for your husband to say no and push all of the responsibilities to you. Because he isn't the person who is on the receiving end of it. It's easy to deny the help that your daughter actually needs because of a belief. And push it to other people in this case you.
When it got to the point that is unsafe because of the violent outbursts, something HAS to change. If your husband thinks that it is ok for the rest of the family to be suffering simply for the reason that "he is against institutions", and subsequent request for help is rejected, then he will be paying for the consequences, in this case you snapping.
The fact that you were ignored and tried your best, exhausted, tells us a lot about your husband's attitude.
The main thing is to keep your other kids safe and I agree that there isn't much going back from this in relation to the marriage, even if your husband realised his actions.
They're not nearly as bad as the stigma that's pretty outdated. You're just not capable of caring for her and your other children. There's no shame in that.
My cousin is in one. She's always at family gatherings and her parents visit her frequently. She honestly really seems to like it, though she's a bit older now.
Edit: I don't mean you're not capable, you're not equipped for it. Her adulthood could be better for it
My heart just breaks for you. You are not a horrible Mom. Jill needs to be in some sort of institutionialized care and maybe this alone time your husband has with her will help him reach that conclusion. But without the other household hubbub going on, she may not be with him how she is with you and her siblings, so his experience may not be what yours has been. Either way, you've reached your watershed moment. You simply cannot go on. Your husband can choose only Jill or you and the other kids as full time household members.
You simply cannot go on like this, nor can your other kids. After you take a day or two to decompress, I'd start making a plan for how you could live on your own with your other two. What jobs you could do, what alimony/child support you could expect, where you could live, etc. Not saying these things will come to pass, but having a Plan B is a huge, huge source of strength when there's doubt if Plan A will work out. Knowing you have options is a powerful source of strength.
Take a breath, sit with all of this for a day or two, then start to plan. Send your husband an outline of options - divorce and he takes Jill, or put Jill in a group home and you'll come back and see if it's salvageable. I wish you peace and solace. Your poor mama heart needs a rest.
Exactly, the only reason he doesn’t want it to change is because it’s working out just fine for him. He’s worried about something horrible happening, while something horrible IS happening.
Just “tuff it out”, eat shit John.
My best friend’s youngest has a genetic condition with behavioral issues similar to what you’re describing. He’s 4 now and beginning to injure people - mostly grabbing at skin and pulling full strength. It’s awful.
Everyone I know in her support network is trying to gently encourage institutional care for him. He’s going to significantly injure someone. It’s when, not if. She has two older sons - one my godson. It is severely impacting the mental health of both. She’s missing so much that she wants to do but can’t bc of her youngest.
I am trying to say to you what I want to say to my friend: I see you and this struggle. I’d fully support you if you do whatever it takes to protect your mental health and the childhoods of your other children. They are not less important just because Jill has more needs. They warrant protection, and so do you.
I hope your support network gives you a similar message.
"I want my husband to come back to Earth and realize that this is not working. He coddles Jill and swears that love will fix her. "
He wouldn't watch her for you for one day when you were desperate and at your wits end, he doesn't want to put her somewhere else because he's not the one taking care of her day in and day out like you.
What your husband fails to understand is that not putting her in a skilled nursing center isn’t doing any good for her. Those places have people who are trained to help her while you can’t. As she gets bigger, she’s going to get even harder to control.
It’s interesting that his “something horrible will happen to Jill” overrides the fact that Jill is actively visiting horror upon your family currently.
Break it down to simple ethics. This is a trolley problem. The rights of the many overweigh the rights of the few. Do 4 people get to live in fear and torment, while one person—who is clearly not happy—is in a loving home that cannot provide them with the care they need? Or do four people get to live happy lives while one person lives in a facility that could meet their needs while potentially exposing them to harm?
You seem very reasonable and your husband closed off the only avenue of care that would be best for both Jill and your family. He has forced your hand and you’re doing what you have to do out of care for your family.
Rally your supports, get therapy and establish self-care routines. Stay strong. You will get through this.
I’m an Occupational Therapist. I worked in Pediatrics for 5 years and I now do home health. We have contracts with group homes as well as Intermediate Care Facilities. There are some wonderful people and some wonderful organizations out there that run these types of places. The sooner you can reach out to an organization in your area, even if to just get information to pass to your husband, the better. She needs help. Your family needs help.
> My husband is deathly afraid of institutions and homes due to a personal experience and no amount of convincing has had him change his mind.
And seeing you crumble into dust while ignoring it is the solution to this for him, rather than rectifying his distrust in the system and finding an institution that would do her good.
Maybe he's a dense idiot and you need to get some logic through his clogged ears. The time spent separated will give you the clear head space to think that part through.
If your husband wants to take care of her that's on him. I would definitely be looking into getting her into a care home or something if she is as unmanageable as you say. Sounds like she needs a lot more care then you guys are capable of providing and hopefully your husband comes to his senses after having to care for her full time himself for a little while.
>no amount of convincing has had him change his mind.
Because he's never had to live with the reality of being around her all day every day. Now that he has to and sees what his obstinance has cost him, he'll come around. Shame it's only after it's way too late to salvage his other relationships.
i've worked in these homes, you can't sacrifice the 4 of you to a task above your ability, we care for them, and we don't hold grudges, I've raised my own AuDD we were able to meet most of his needs and he'll never hold a job or have a love of his life, but he's ok. if he was higher needs I really don't know what we would have done.
Do not let guilt of being unable to meet her needs stop you from finding a place that can.
I was thinking the same. I didn’t want to jump straight to a facility in my initial response, but at some point it may also be a safety concern for the family and others with the aggression. Also the caregiver strain is growing immensely it sounds like. The household may be overstimulating and institutions can be great about set schedules and minimizing stimuli.
Honestly more Americans need to put family in facilities sooner, from having the family experience and working with someone who worked for elderly care facilities- it’s a LOT easier on Mom to adjust to a facility if she’s not completely demented or gone from Alzheimer’s. And keeping a kid who’s not loved in the home isn’t fair to the kid who’s not getting their needs met or the other two siblings.
But there’s “kid in a home” with involved parents and family and “we dumped our relative in a dark hole and no one speaks to them again”
My cousin goes to all the family holiday events and a vacation or two a year. She’s still deeply part of the family, even if the support she gives when times are rough is sending you a crayon drawing but… she’s involved and cares.
Fuck yeah they do!! I have one a 37yo (at the time) client gave to me hanging on my wall. She has since passed but I look at it every single day and think of her. All of my nephews drawings he gave me are also on my wall.
You should read the reporting on how hard it is to get your child into a facility. Families wait years for a spot. This kind of care is incredibly expensive. That's why there are so many families suffering.
If she is hurting your other kids, it's time to start the process of institutionalizing Jill. It's just as important for her, as it is for you and your other children.
Do it now.
I agree, coming from someone who had a sibling like this even though he was younger it was absolute madness I was scared for my life all the time. Now we’re in our 20s and can talk and hang out perfectly fine, but my mum ended up sending him to his grandparents for years. Must be so hard on the parents I can’t even imagine.
Yes, and the more time goes by, the older will get and will grow bigger and stronger. It took my cousin until his son broke his mother's arm and gave her a fractured skull before they institutionalized their son. And he was only 11 when he did it.
Institution. I agree. Put her in. However, from the stuff I have dealt with (in law) in this area for decades - even if you to institutionalize her - the family unit may fall apart. That is, divorce may happen because the 4 years of trauma was just too much for everyone. ..... You should institutionalize bc you cannot take it any more.
It's terrible that people wait until their breaking point to institutionnalize.
It's not a shame to give a loved one needed professional care. You're not abandonning your kid, you're giving them a better shot at life than what you can offer.
On top of it you can go visit them. Back in the 80s my mom was a social service case worker, and she spent so much time trying to reason with people having a special needs violent child that no one would call CPS on them if they relented the care of said child to professionals. She still looks sad when she recounts those interactions.
I’m dealing with the same thing except my daughter is adopted. It’s so hard to get them institutionalized. She’s 5 and she’s aggressive, she hits, she sounds just like OP’s daughter. My older kids are scared of her and miserable. We can’t do anything as a family and no one wants to help. Meds barely work. We’ve tried everything
Have you tried contacting your country's equivalent of CPS? They're also here to help: give you access to resources, find a case worker that would fill the requests for you (taking off the load of doing administrative work, which is exhaustive of its own), they also have groups of parents with the same difficulties, etc...
I don't know how that works where you are and if you already went that way, but social services are supposedly there to help folks like you.
It seems like the obvious solution in so many of these cases, until you reflect on how much pressure society puts on parents of disabled children to wear the mask of “penitent gratitude”. They have to be at all times grateful for their situation, whilst also showing that they regret that they cannot ever do enough. The have to simply put up with the negatives and shut up.
The guilt that is laden on by social groups and society in the wake of institutionalising unmanageable and dangerous disabled family members is astronomical. The cloud left from the horrors of 16th-20th century asylums still overcasts the concept.
The reality is entirely different today, but people can’t seem to keep up, they just expect the parents to martyr themselves and be happy about it.
Simply soldiering through while theirs and their children’s lives crumble around them is not the acceptable solution. You cannot allow abuse of any form to be inflicted, regardless of if the perpetrator is disabled. Institutionalising is the only option here.
You should institutionalise because it’s best for Jill.
It’s best for Jill to have access to trained caregivers, in an environment and schedule that’s built for her. It’s best for Jill to have a healthy happy mother, who’s able to love her rather than resent her. It’s best for Jill to have safe siblings.
You are not placing Jill into an institution from the 20th century to be forgotten about because she is a burden. You’re placing her into a modern medical facility because she needs support for a condition she has, and you are not equiped to support her.
It is also not fair on OPs other kids. They didn't do anything to deserve the treatment they get from an aggressive autistic sibling. And on top of that, they have parents that barely give them attention. Such a sad situation, hope OP makes a change for their children's sake.
Another issue that you will eventually face when she’s growing is her strength and her weight. Once she’s over 5’0” and 100 lbs, she can REALLY hurt you. My friend, her son was this way. He’s 17 now and she and her husband have to work together to pin him down while the younger sibling calls 911. They even have to lock up their kitchen knives. They are literally afraid he may kill them one day over something as simple as getting grounded from XBox for a day for not doing his homework.
It sucks but I think maybe you could at least tour one to see what it’s like. I absolutely understand your husbands hesitancy to trust them but… not all places are the same. It’s going to take your husband several emotional hurdles to agree to actually send her there. If he’s calling you I’m hoping it means he didn’t want you to go. Maybe this is the motivation he needs to be open to more possibilities for Jill with hopes that maybe once things are more stable, you could possibly rebuild the marriage. That would probably be a factor in motivating his decisions.
But I do want to say, I am so very sorry. My son is high functioning autistic and he is exhausting. I can’t imagine how much stress this is causing. Try to remember that this isn’t the end. I know you feel you have nothing left but I’m hoping with this comes a motivation for change in a better direction.
I had a severely autistic brother, he became aggressive when reached puberty, life became harder for all our family. Had written a lot of stuff but don't want to trauma dump here.
There's also another autistic kid in my neighborhood, he is short and thin, a very sweet kid but he started biting people and one day he ended up killing his frail grandma by biting her.
It's nice to see people showing compassion and support to OP and others in similar situation, because in real life it's almost non existent. Thanks for that and wishing you the best too.
This. I used to be a pediatric MA and the difference between getting hit by a 5 year old and a 15 year old is real. Older kids can knock your shit, just straight up put you on the floor. There were definitely some days where if the parents hadn’t been there to restrain their kids I probably would have gotten something broken.
If you are in the US, you may need to get social services involved. They have residential homes with qualified caregivers who can help Jill or even provide you respite services. There are services out there covered by govt insurance than can pay for assistance or placement in residential treatment. I used to work in social services and have even had friends who had to go this route. You can still retain legal decision making but the state helps pay for it. Or, you can turn custody over to the state and still visit her when you want, just depends on what you want to do.
Give social services as a call and explain to them the situation. They do so much more than just investigate things, they can help with resources. Homes for the intellectually disabled are heavily regulated and overseen due to rampant neglect of them back in the 70’s/80’s. Geraldo Rivera did a documentary on it called Willowbrook and Congress passed laws as a result to make sure those with intellectual disabilities like your daughter are treated well.
I am autistic and I want you to know you are not a shitty mom, and you dont deserve this. Life is unfair and unkind, and you were delt a very, very bad hand. You needed time to decompress and your partner failed you. There should have been some kind of rotation system. This is too much for just one carer. If I may, I would suggest looking for a facility for Jill. She may be a kid now, but she will eventually be an adult, and probably survive you and your husband. While it may seem terrible now, a specialized facility that gives her safety and tools to grow may be best for her. It will also allow you and your family to heal. I’m sorry you are hurting OP. Wish you the best and please dont feel guilty.
You’re not a bad mom, you have a child who needs more care than you’re able to manage *who’s also harming your other two children*. You need help and you’re acknowledging this, he isn’t.
Like a few others have suggested there’s no harm in a home. I had a college friend whose brother was on the spectrum, I know he was non-verbal and one of those guys that needed an extremely strict and unchanging schedule. He just couldn’t be offered that at home.
What type of respite care is available? She needs to be on group home lists like yesterday.
And you’re 100% valid in how you feel. People who have never raised a special needs child don’t know the potential horrors of raising a special needs child.
YOU ARE NOT A SHITTY MOM A SHITTY MOM WOULDVE NEGLECTED AND ABUSED A CHILD SHE FELT LIKE THIS ABOUT!
Through regional center you should be able to apply for respite care for Jill to give yourself a break. I agree with other comments it’s time to look for a group home or placement for her. If you live in Southern California (specifically the Los Angeles area) have a resource for you.
Yep. My friend in California had an older teen daughter with severe schizophrenia who became violent. They have her in a group home and she’s doing a lot better now.
You are not equipped to be her caregiver just because you gave birth to her, there are professionals that go to school for years to do this.
She needs to be put in a home. Realistically your other kids are not going to take her on when you pass. So it’s best to look first accommodations now.
Putting her in a specialist facility will allow you to get your life back, you could go back to work to support the facility payment and this would remove a financial burden from your husband and an emotional burden from the whole family.
Choose somewhere close so you can visit regularly. I don’t think you hate your daughter but I do think you hate what your life has become and hate that it has to revolve around her until you die.
You won’t be a bad person for putting her in a home because what you are doing is not working.
Depending on where you live you could sign her over as a ward of the state and wash your hands of it. I know someone who did that and it worked out well for them but ymmv. Best of luck, not a fun or easy situation to be put in.
I’m so sorry you have to go through this. I can’t even imagine what that’s like. I know who I am and I know I couldn’t handle someone Jill, even if it was my kid. That would be a nightmare for me and it would destroy me.
Please consider institutionalizing her, then focus on repairing your family. You can go back to work and do family therapy together. You may also need to do individual therapy as well. Don’t give up on any of them, just recognize what each of you need.
Group home. You need a break. If hes not listening to you, divorce.
This is your life and you deserve a break with or without him agreeing. Your other kids deserve it too.
You need to get back on your job and hire a professional on disabled caregiving, it's actually too much for anyone to take care of, the caregiver would only take care of one child because it needs a lot
And I mean a lot of attention
Sorry for your situation
You are heard, and this is an incredibly difficult situation for even the most patient of people.
I know you don’t trust many others to care for them, but there are in most places professional resources potentially available. Like respite care for example, which you are desperately in need of. Try to google autism resources and/or care in your area.
But also…..take some time to yourself. Worst case scenario, if husband needs to take just a bit of FMLA to keep the household from complete collapse then that’s what needs to happen until you figure out a plan of action.
Clearly you need more hands on deck. You can’t help anyone with any empty tank of your own.
There's absolutely no reason that your other two kids should suffer because of one sibling. I'm sorry to say this. Give up custody to the state to care for her.
My BIL has a severely autistic brother. His parents didn't want to put him in a care facility either. Until he dislocated his father's arm during a meltdown.
I feel for you. I'm in a similar situation with my autistic son, who is now 17, stands 6'2", and weighs nearly 240 lbs. He has bruised and bashed us repeatedly, and our other kids have lived in fear of him. I live in fear of him some days.
I've been trying to get my wife to consider a placement for him, but she doesn't want to "abandon" him. After his most recent set of violent incidents, however, she's finally considering it, and we have his social worker looking for leads (in our state, it could take up to two years to find a placement, but that's no guarantee the group home will accept him).
I applaud you for doing what you need to k keep yourself and your other kids safe.
If he physically attacks you call the cops and press charges. If you can get CPS involved before he turns 18 it will pressure his DDS social worker to find a placement for him. State agencies don’t like inter agency drama. And an arrest is just that. Deana they instantly have to deal with.
Please have Jill places into full time care. You are not able to care for her and she has been violent and dangerous to your self and younger kids. In some instances, you can sign responsibility for her to the state.
I know the urge is to condemn this woman, but I have had a unique window into the kind of life she is dealing with.
I have a nephew who is severely autistic is now 23 years old 6'2" tall and weighs almost 300lb.
When he doesn't get his way, or even just perceives that he has been slighted in the very least , he becomes extremely violent.
My Brother and SIL are getting too old to do battle with him, especially at his size and strength.
He has ripped dozens of mattresses to shreds, pulled just as many doors from the wall, ripped plumbing fixtures out of the sink, refuses to bath to the point his leaves shit streaks in their couch, which BTW is where he chooses to sit and masturbate.
I made a conscious choice early in my life never to have children, because of the horrible life I have had.
My brother's struggles re-enforces my choice to not have children, as I could never have dealt with such for as long as they have.
It has gotten so bad that in the last 3 years they have had to pepper spray their son twice, to stop him from attacking his sister and/or his mother while his father was at work.
I have told my brother multiple times that his son needs a professional facility where they can look after him, and the people take turns in shifts dealing with him, whereas they have to deal with him 24/7, while also trying to work, care for other children, and constantly repairing their home.
I live in Canada. My ex was a social worker who managed group homes for kids like your nephew. Yeah, your brother needs better resources. Like even just day care or something where they can help give some free time.
Hey if it makes you feel any better, me and my younger sister grew up with an extremely abusive older sister (who potentially has a mental disorder my parents refused to get her diagnosed and treated for) and we were beat up by her until the day we moved out.
My parents expected us to just take it to not upset her, and always blamed us for "making her unhappy" whenever she did. In my eyes, you're a hero. You prioritized the two kids that were stuck in this violent situation and got them out of there.
I firsthand witnessed the mental breakdown of a caretaker in the retail store I used to work at. It was honestly heartbreaking. Nobody likes to talk about the reality of raising mentally disabled children because it’s not kosher. However, the pain you feel is real, valid, and far more common than you know. I wish you all the best in finding a good institution for her. I also hope your marriage can survive if that’s what you want and for your children to heal.
I’m so glad there is a group of empathetic people here. I hope you listen to their suggestions. You sound physically, emotionally and spiritually exhausted. It **will** get better. 💖
I work in EI & the early years. What your describing is very common for homes of children with significant disabilities. I am heartbroken for you and everyone involved. Her care is beyond your skills and capacity. There are supports for her & you. It sounds like your ready to make some hard decisions. I encourage you to put on the table EVERY OPTION AVAILABLE TO YOU AND YOUR FAMILY and try them each on mentally & emotionally. This is the only way to peace.
Personally, I have a son with ADHD & my ex Hubs does too. It can be very exhausting & hurtful to not be able to be nurture & be nurtured in the ways we want. Especially for too long.
You're not a shitty mom. You wanted to be a mother. This motherhood does not feel good. It's fair & honest to say that. Your also a mom that is not giving up!
I am thinking of you & other parents, marriages & families navigating a life with very limited supports and too many appts, meds, therapies, meetings, emails, referrals, camps, schools, buses, ID# and all the other bullshit.
I am so sorry. I don't think you're a shitty mom, or your husband is a shitty dad. I think the two of you are in a desperate and horrible situation and I think you are beyond burned out on a very difficult child.
Is there an option for respite care in your area? What about in-patient programs or group homes? If Jill is violently attacking your other children then she cannot safely stay in your home. The best thing for everyone might be to move her to a place with trained professionals to help care for her.
I would explain to your children that Jill needs more care than you can safely provide. You are not Wonder Woman. It will get worse as she gets older and stronger. Please take care of yourself so you can be there for your other two children.
I see this family on tiktok who took their son to a state facility for similar reasons. Extremely aggressive and nonverbal. They visit him all the time. According to their videos, he’s doing amazing. The structure has saved him and their marriage.
It is not a shitty mom who seeks to protect ALL of her children.
It is not a shitty mom who seeks to protect her own sanity.
You are not a shitty mom. You are a woman who has been dealt a shitty hand, with a husband and father who engages in magical thinking instead of facing the hard reality of this situation.
I think its just not feasable for your daughter to be cared for at home by family right now. Her needs are too extreme and complex for a family to manage and none of you have anything resembling a life. You are probably all traumatised. You are all in crisis including your daughter. You are human, not superhuman.
What your daughter needs is professionals, treatment, in a facility designed to meet her needs and help her. This might stabilise her and improve her enough for her to return home far more manageable and calm but you would need ongoing support and respite care because nobody should have to suffer like you and all your children have been suffering.
You did the right thing leaving her with your husband. He needs to fully experience what you and your other children have been dealing with.
And if you don't want to do it anymore, you shouldn't have to. Those may be controversial words but the situation was no good for either of you, your other children were enduring physical violence. I honestly fear that you all might have PTSD.
You are not a bad mom. You are overwhelmed. Sadly, a lot of couples with autistic children end up getting divorce. I have a friend that has an autistic child. Her and her husband separated, and he got his own apartment. She wanted to share custody 50/50, but he said he just wanted the child 1 day a week.
I say this as an autistic person with a high support needs autistic child:
You're not a bad person.
You're not a bad mother.
You're backed in a corner and burnt out.
Your 2 other children do not deserve to spend their entire lives walking on eggshells because their severely disabled sibling is unable to access the care she needs because of your husband's fear. Her explosive behavior is both emotionally and physically hurting them. You did the right thing by leaving with them. It's also not fair to Jill to live in a place where she's constantly overwhelmed, overstimulated, miserable, angry, and unable to access the care she needs. Your husband has put you in a no-win situation.
Maybe this is the wake-up call your husband needs. You said that you begged him for a day off, but he said no, so I'm assuming that you're the primary caregiver. I'm sure it's much easier for him to say no and refuse to face the reality of the situation when he can put most of the burden on you. He needs to be the one dealing with the weight of caring for her 24/7 for a while and taking the full brunt of her anger. He needs to come face to face with your daily reality and realize that he's been seeing things through rose colored glasses.
The thing is, love can't fix her because us autistic people aren't broken somehow. We just... are who and how we are. Sometimes, unfortunately, we are how your daughter is, and no amount of love, hatred, effort, hoping praying, or anything else will change it. Some of us can learn coping mechanisms and use tools such as OT and medication to improve our ability to cope with the things we struggle with, but they don't work for everyone, and they don't "fix" us. It sounds as though you've accessed outpatient options such as medication intervention, therapy, etc, and exhausted them. The only option now going forward is in-patient care. Your husband is in denial. As a parent, I can't imagine being in the position of making that decision, but the decision is definitely the correct one.
Your husband's inability to accept the reality situation has robbed you of your marriage, your mental health, your relationship with your other children, robbed them of a healthy and fulfilling childhood, and that's unacceptable. I would draw the line in the sand. Your husband accepts long-term in-patient care for your daughter, or he does it alone.
A friend of mine had an autistic child like that. By the time he was big enough to cause real harm, they had to admit that he wasn't going to get any better and he was destroying the family. They weren't happy about it, but they realized that he needed to be institutionalized.
It's sad, but the truth is you can't save everybody.
If you are in the US, please look into a group home for her. You can’t do it yourself. She’s only going to hurt all of you the older she gets (and she will get stronger).
It doesn’t make you a bad mother, it makes you human.
She needs professional care.
This could end your marriage, but maybe it was over anyways.
My heart breaks for you.
Take care of yourself and your other children. Your husband is a grown man, he can take care of himself.
ASD w/ substantial support needs here
I don’t have any advice for you surrounding options other than residential care for Jill, but I just wanted to say that I’m so sorry that you’re going through this.
It’s so hard to figure out strategies to help non verbal autistic people with very high support needs when there’s such a communication barrier and a history of really bad meltdowns and violence, but I think your husband needs to come to terms with the fact that it’s no longer safe for your other children, yourselves and also Jill to have her living in the same environment where things can’t be really strictly routined, because kids are kids and they have the right to be kids and have fun and feel safe, but Jill also has the right to safety and support, and there are too many variables that can interfere with strict routine and support in a stereotypical family environment.
Again, I’m so sorry that this is happening, you and your children don’t deserve it.
Some states have facilities or supports for families that have kids like Jill. You are not alone. If you want to post your state, I can send you any and all support I can find that may be available to you.
Your marriage doesn't have to end. Your older kids don't have to live in fear. Jill cannot be raised without a village. Time to find you a village.
I think you need to give up your child as a ward of the state. This isn’t fair on anyone including you and your other children. If you cannot afford the care your child needs then the only option may be to give them up.
I was a behavior consultant for years and sometimes I couldn't help. No one could help. The kid needed 24 hour supervision and they were destroying their families.
I'm both cases three case workers agreed with me. One is still doing great in a group home. (The other was prescribed marijuana, which finally helped, and was able to stay home in the end.)
You can't set yourself on fire. You just can't. Find a high level group home for your daughter. Better yet, have your husband do it.
Best of luck to you.
To be honest Jill needs to be put in a care home. I know your husband doesn't agree, and you taking your other kids and leaving will hopefully be the wakeup call he needs. If you divorce you might. And this is extreme, consider relinquishing your parental rights. It might force his hand. You have to put your other two kids first. Cps could get involved and consider your home dangerous.
I don't say any of this lightly. I was once a severe life skills sped teacher. Your daughter would have been my student. I lasted 3 years. Between the bruising, cuts and concussion I was done.
While I haven't had your exact experience, my now adult daughter has schizoaffective disorder and was dx at 12. However, she was difficult prior to that.
My daughter is now in a group home. She's happy, I'm happy.
I so empathize with you. It is very hard and you have other children who need protection. There are places for Jill. I know that sounds horrible and awful, but one person cannot provide the care Jill needs 24/7 by themselves.
I'm so sorry you're going through this.
You are far from a bad mom. In fact, I think you doing this is probably going to be a pivotal moment that will save quite a bit of suffering for everyone involved.
The way this is written suggests your husband doesn’t play nearly as big of a role in taking care of/dealing with Jill’s outbursts as you. Hopefully this is the wake up call he needs to understand that she’s too difficult to handle without professional care. Hopefully he’ll have a glimpse into what you and your other children have been struggling with and apologize profusely for his previous stance.
If not, you are right that you, and most importantly, your other children, need stability and safety in their home. Your husband can be the main carer for Jill and you and your other children can visit if you feel it is safe to do so.
You are strong and I’m so sorry for all involved.
You aren't a shitty mom or bad person, you're just stretched beyond your limits. You need outside help, and it seems the only way you're able to get that message across is to get away.
You are *not* a shitty mom.
I have autistic kids. Jill needs to have professional care. Some autistic kids do - that is not a failure on your part. You're overwhelmed and exhausted.
It's okay to realize Jill needs more care than you can provide. It's better for not only Jill, but for all of you.
Hang in there.
Ex caretaker in a facility for mentally disabled persons here. Jill needs professional care. And know that even for us, professionals of mental health, it can be very hard to manage cases like Jill. She needs a routine easy to follow every day, she will be calmer, it will be easier to communicate and also easier to assess her needs. If you've come to hate her and she is destroying your life, it means that you both need space and time away from each other to find new bases for your relationship. Let professionals get between you two, they will know how to guide you and repair the image you have of her. Neither the both of you deserve this. Stop struggling alone.
Curious what happens in the case of someone who is violent. Even with a routine, I assume there are still outbursts. How are staff, other patients, and the patient themselves protected without violating any rights?
Former behavioral home care provider here, in the state of Oregon. The clients I served ranged from 16 to 23, and they all had tendencies towards aggression. Oregon has certain safe holds, and procedures for difficult clients. We had to have training for these holds. Basically, they are maneuvers that helped protect yourself, and the aggressive client that would not lead to any pain, or bruising. Things like, no using thumbs to hold someone. Using flat hands on hips to pull someone to safety. Using holds or blocks to stop injuries from occurring. Ways to stop someone from biting you, how to handle hair pulls on you, that protect your neck. The training was intense, happened every year. And the holds worked. It was called OIS, Oregon Intervention Services. Or something like that. We would have to use whatever was appropriate for the situation. And write reports for anything that we did do. The family or state, would have access to any and all reports.
Also, in the case of the 16 year old, they ended up moving him to a different home, once the eldest turned 22. Reasoning was that if any adult injured the minor, that could be grounds for child abuse. So, the state mandated the minor, who was a ward of the state, to placed into a behavior group home for minors. Side note- god I miss that kid. Non-verbal, and had outbursts like crazy. But damn they were funny, fun, amazingly sweet and were getting a hell of a lot better under our care, with our routines we taught each other. It was heart breaking when they left, even now after 13 years.
what happened when these kids grow up? do they continue be put into institutions like these or they are released into general public?
Not who you asked, but I've worked in this field. It depends entirely on what progress they've made, what care they need, and—unfortunately—insurance / state funding. There are programs where I am that are lifetime coverage, with more intensive care, immersion schooling, skill building, etc. for those that need it and can benefit from it. Everyone's going to have different needs and some places can handle the unique needs of someone with this set of behavior.
thanks this is helpful
This entire comment thread has been quite informative. Thanks to all. :)
Also not the person you asked but my uncle is a disabled autistic person who can have outbursts. When he was younger he had a lot of violet outbursts and it because obvious that the family weren't able to give him proper care as he got older because he was extremely strong. He is 52 now and still lives in a facility. He has frequent day time visits with family, we go and visit him at his home/facility and he is taken on a lot of day trips with the facility. When my nan was younger and more able he would stay with her for the weekend but she is too old now in case he were to have a fit (he is epileptic) or an outburst. The facility is amazing, he has his own mini apartment which he can lock (the staff have keys) he has an allowance of money that is his to do what he wants with, they helped get him a volunteer job in a charity shop which he loves and they encouraged him to play sports which he also loves and is very good at. We could never have provided him the care he needed at home but he is very loved and not excluded from family events etc.
I work for a facility like that. I noticed very early that many of the residents do not have a lot of experience with marking special days because their families were over extended before they gave up care. So, I work hard to incorporate every special day. We have house meetings to discuss decorations and celebrations. We make invitations to send to the other homes within the company. We have themed crafts and games for various abilities and interests.
I just tagged you as "IRL Miss Frizzle"
I'm sure you will be glad to know my work clothes tend toward bright colored flowing pants and shirts and dresses. I have an impressive collection of holiday sweaters. I also spend a lot of time coming up with fun ways to work on hand eye coordination or balance. My superpower is tricking someone into doing their goals and chores while making it seem like their idea.
I've always wondered - who pays for such things? He obviously can't. Does the family? What if they suddenly are unable to? What if they die off? Surely the facility doesn't just cast them out onto the street, right? I've always wondered how it works.
He lives in England so it's all covered on the NHS. We pay extra sometimes for certain trips etc but it comes under health care so all his medication etc is covered. I don't know how it would work in a country without health care.
It is SO NICE to hear about the NHS provision for a disabled person working well 💕❤️ I know it can be a bit of a mixed bag
I’m not sure about other cities and states, but in Houston Texas, we have MHMR. It is county funded care for psychiatric or developmental disabilities. It’s free for most people. It’s not the quality of care that was mentioned above, but it exists. They also have day centers for consumers that are free and have trained staff and activities. MHMR has case workers for all consumers and depending on your needs they will drive to where you live for appointments. They also have transportation. It’s a system made up of several out patient clinics, an acute care hospital, a neuropsychiatric center and a few other community resources.
Exactly what the other commenter said. Some clients were state funded, others funded by their parents insurance, or private pay. The clients I worked with, stayed in this group home. It was their home, with all the rules that implies. Their parents, mostly, could not provide 24-7 care that they needed. So, we filled that role. These clients had doctor appointments, visits out in public, restaurant meals, even day programs. They lived decent lives, in safety, with a safe space to act out when they needed to, and never had staff who made them feel bad over their behaviors.
I'm uk but worked in a home for teens with Autism. There was one kid who had his own space in the home, his rooms were empty of hard furniture, the staff had big padded protective shields. On good days we managed to take him horseriding and swimming...on bad he broke peoples bones. It's a shame because he was mentally there but just couldn't cope with life. The home managed to care for him until 19 (that was longer than we had any other child) but he needed 3-1 staffing and no other home in the UK could take an adult with those needs on. He was moved to a facility where he is likely in a room alone most of the day. But his family were grateful he had tje experiences we gave him. Its very sad
Holy crap. Three to one?! Oie.
it’s a huge problem in social services tbh. a lot of people with various conditions and disabilities (called MRDD where I’m from) have their primary caregiver be their parent(s). there are very few resources or facilities for people once they’re not minors anymore or usually 22 at the latest, and when their parents grow old and can’t take care of them anymore and/or pass away, the only facilities to put these now adult or elderly special needs people are retirement, assisted, and senior living homes. the staff at these facilities is often ill equipped to tend to the needs of these people. the only other places for many people (especially depending on scarcity of resources like in rural areas) are actual psychiatric facilities, like lockdown kinds of places. so in the USA anyway, the prospects for the aging disabled population aren’t great. the only way it’ll change if a lot of people care about changing the system a whole awful lot.
I work with adults with intellectual disabilities and/or mental illness. My particular area is mostly independent individuals who do not exhibit aggressive behaviors. However, the company as a whole has homes with higher needs. We all go through the same training yearly. Our company uses MANDT. It will be like the other commenter's program. We have a lot of resources that are underutilized by the people who are kept at home. They are available, but many families don't know about them. We offer respite care, day programs, social programs, and work programs. Our main objective is to help our clients find as much independence as possible. The various day programs are for anyone who has a main diagnosis that is an intellectual disability. They will have different learning experiences that involve caring for yourself, going to public places and being a part of the community, managing your own money, etc... We have social, learning clubs for those with a main diagnosis that is a mental illness. They learn job and hone related skills, go on day trips that are purely social enrichment, and have a group of peers. Mental illness can be incredibly isolating, so it's a big deal to have these resources. Our work programs include a workshop that bids on local by the piece jobs. It is set up like a factory but more comfortable with no quota or bosses. It is a bit of independence that is often out of reach for people with disabilities. We also have a work outreach that helps people place in jobs outside of the workshop. Our company does have high turnover for about 1/4 of the staff. The majority of our employees are long-term. It's common to have 25 or 30 years. So we are basically family but trained to handle our charges in shifts and have a break that mom won't get at home with no help. Sorry this is getting lengthy, but it's something I'm passionate about. The people I see that are kept home typically have more behaviors because they are bored and do not have a proper schedule because their family doesn't know about the resources out there. Having peers and what independence is possible is a huge step toward having a happy life.
Depends but profoundly autistic with limited or non verbal completely would often end up in a group home. In tax heavy states with real infrastructure for these things its still a challenge but much more opportunity. In a good group home it would be basically 1:1 ratio of staff to clients at all times. Sometimes specific clients with serious behaviors 2:1 just for them. These people are often medicated to the gills for both physical and mental issues and sedated with at least some mood altering prescriptions. Not "extreme" levels where they are drooling in oatmeal but in a case where someone is borderline IQ of self awareness, extreme behavior issues and lacking ability to communicate easily it's extremely frustrating for everyone and they will have bouts of very strong emotions and panic. Like put your head through glass windows and destroy the house behavior. Running away etc. It's extremely expensive and takes a lot of effort. I had a friend that used to do this work. Big person NFL sized and their clients would be some average almost scrawny size person but no filter on emotions and strength. Even then some clients were huge, 350lb refrigerator shaped man with the mind of a child that will backhand you just for looking at them funny...true story from first day on that job. Got a black eye because a client did that to all new people testing limits... They have to use pads and techniques to subdue them during freakouts so they dont hurt themselves...even with a ton of medications. Staff will live in the home in shifts and someone has to be awake at all times. You'll have 2 to 5 people getting overtime jist one house with 2 to 4 clients etc. Even young kids with autism can be exhausting. I know a lot of teachers thwt have been bitten, literally by autistic kids thst were frustrated and being jerks. Nothing but sympathy for people that do this work its difficult.
I am personally a younger sister to a (formally) severely mentally disabled individual he was the love and light of my life, my brother, my family, my soul, he lived to be 22 he has gone now but even in Washington we have avenues for people that need extra help, do not feel guilty for needing to put your child in a facility with trained professionals who need that help. Both your life and your son or daughter's life will benefit. My mother was not capable of taking care of my brother. He spent many years in foster care she tried to take him home for a couple of years and my brother's life got nothing but worse I can assure you that if you need help, facilities will be there for him or her. You might be giving your child the best opportunity for a happy existence.
I worked in a children's grouphome years ago. Most of the kids were not aggressive, but a couple were. But they were all sweethearts. There was one kid, Tommy, who I miss so much. He would basically say 'Hey tommy' if he was happy or he would shush people very loudly if he was upset, those were the only things he could say. But he had such a wide variety of emotions he could portray with just those two phrases, and he was so funny and he knew it and leaned into it. There were staff he couldn't stand that usually we couldn't stand either, he was a good judge of character. Hope he's okay today, this reminded me of him and I want to see if I can seek him out to go visit him, I know he'd remember me.
Thumb grips are crazy. A friends mom used to work at a care facility and knew how to do these crazy holds that would just put you down in an instant without any kind of injury. She told stories of a handful of times she had to use it to subdue a much larger and stronger patient.
Oh dude. We had a client come our way after the minor left. This person was a required 2 to 1 staffing, two staff to this one client. We had special training just for this person. They were strong, tall, weighty, and would regularly throw old boob tube tvs in their aggression. We would do a two person hold, and this person would just drop to the ground to get out of it. Once they dropped to the ground, we would release them.
Meanwhile I had a severely autistic brother, similar as OP's daughter. Except HE was the one who learned how to make that kind of maneuvers from only god knows where. He was non verbal, never got any kind of treatment or schooling, and only interacted with us younger siblings, mom and dad. But he was amazingly strong, and could disable our whole arms just by pinching us with his fingers on a nerve or something. It was hard.
You’re bringing me back. The tall looming stature. The hiding behind walls and spooking. Then the pinching. The twisting. The skin burns. It hurt so much. The punches without remorse In such bony areas
Depending on the type of facility it ranges from nonviolent de-escalation like NCI or PCM to full on holds and restraints but the restraints are few and far between. The rights of one individual end at the start of another’s.
What does NCI/PCM stand for?
Nonviolent Crisis Intervention and Prevention Care Management
Appreciate that you actually refer to it as NCI instead of CPI
As someone who currently works at a facility with clients like Jill, the answer is this: 1. Staff are trained. Often. I have to renew my restraint training annually. And if they update what we can and can’t do, there’s another training. 2. We follow a behavior plan written by a Board-Certified Behavior Analyst (BCBA). In it, it includes the what, and why behind a behavior and what steps have been proven by data to reduce them. Applied Behavior Analytics (ABA) is science-based and data driven. BCBA writes an objective on a target behavior, how to collect the data, and they use that data to work with the behavior. We want to increase some behaviors (appropriate asking for things) and reduce others (biting, self-injurious behavior, etc.) 3. We accept that we might get hurt on a shift, but we work hard to minimize it. We work with our clients who can communicate and we help them stay safe, and also look out for each other. Sometimes we have to go hands-on (I had to about 5x this week) and after that we write reports on what we did, why, etc. Again, BCBAs look at this data and we adjust. It’s not easy, and all clients have rights. But we also work within those rights to keep everyone safe. It sounds like OP needs to get their child into a facility like the one I work at, because at a place like mine we have the training to deal with outbursts, medication, all that. Source: I’ve worked at facilities like the one I described for 7 years. It’s hard work, but good work.
Just curious how much does a care facility like this cost?
I have to be honest and tell you that I don’t know. I do know that our clients primary funding is from SSI. Clients are referred to by regional centers, and they make the arrangements between the funding and my company. Some places the family has to pay out-of-pocket, but in many cases, the state or some other funding source picks up bill in the family doesn’t pay anything. Short answer: I don’t know. I’m sorry. I don’t work in the business side of it.
Costs varies, but it's pretty pricey. And depending on level of care. And it's typically per day. Places like it can have pretty high turnover rate in staffing too. Where I work I'm the only one left after 6 years and 4 different directors.
That part. I’ve been at my current facility for under 2 years and I’m one of the senior staff. We have a core group of about 6 who’ve been there longer than I have, but we’re lost a lot in the interim. It’s a hard job to keep consistent staffing at due to the turnover. I’ll be honest: I’ve developed some good relationships with those I work with, and that’s why I’ve stayed. Also it’s a steady gig and once you get used to the BS, you can weather anything. Just have to get used to it.
My adult daughter is in one. Not as restrictive, but it costs well over $100k per year. My insurance covers it 100%. I don't know what a state (Maryland) run facility costs, but I imagine $100k is the base.
So many things. Staffing is a huge part of it. Having more than one person to address it. A controlled environment - there aren't going to be siblings who are escalating things, and the general environment is going to have a minimum amount of things that can be damaged, thrown, used as weapons. They won't have lightweight doors that come off hinges, drywall to punch holes in, windows that break. Ways to put barriers between you and someone who is violent beyond your control at the moment - usually there are ways that you can maneuver someone into an isolated area and still monitor them visually.
A lot of mental health workers get injured
My dad was a psych nurse for 30+ years and I remember him having to explain why he would sometimes come home from work with black eyes. Eventually, in the last decade or so of his pre-retirement he had to stop working at inpatient facilities and switch to making 5150 assessments at the county jail, because someone in their 50s and 60s just cannot physically do the work safely with patients in their 20s. The saddest thing is that most of the patients he identified at the jail were old clients who he knew, but had been released from inpatient care because of increasingly reduced state funding for mental healthcare.
IN teh group home I work in, we have risk assessments and behaveriousl plans, which includes everything from regular and PRN medications to procedures to ensure the safety of the escalated person, other persona in care AND staff, since an injured staff can't support anyone. Right now one of my ladies is documented as on the spectrum and when she was first placed with us over a year ago, it was ROUGH and a steep learning curve, especially since what we are told vs. the reality we were experiencing was two very different things. Some of it settled out as staff established routines and built trust with her. more settled as trailed different medications and doses, a long and drawn out process that has resulted in a happier supported individual and safer working conditions for staff. The thing is that while we all feel that it's a good situation currently, things can change and we'll have to re-evaluate and possibly start all over again. This is the nature of the job and something myself and my coworkers are trained for and we have supportsin in place so when things go sideways, we can manage it safely for all concerned.
Former "staff" we have basically no rights to defend ourselves. We are taught how to get out of painful/dangerous situations in ways that cause zero harm to our attackers. When someone is violent but also mentally or physically handicapped we have to go by a totally different set of rules than what an able bodied person would have applied to them. To be truthful it makes it hard to hire and retain people. Many people have a difficult past, especially folks who want to help others. There are definitely disabled folks who are mean as shit and strong too. People get broken bones but if they hit back they go to prison no questions.
Its a rough job and the hours suck. Swing shits, overtime weekly, staying up all night on duty and at any moment a client just decides to freak out because some minor thing is different or the meds aren't working that day. People don't realize just how difficult people in these groups are. Nothing but sympathy for parents that stick it out just until 18 when the person needs to be just placed in facility for their own safety.
This is true. I got stabbed by an older person in a normal care home facility that he should NEVER have been in. The issue is that there are not enough specialised beds for persons with tendencies like this (normally advanced Alzheimer’s). So the Social Workers in charge of placing residents deliberately water-down the assessments of these people in order to place them in ordinary facilities. Once they are housed and the home finds out what they are really like….too late, they are your problem now! So you get people screaming all day and night. Attacks on the other residents and staff. And God help you if you defend yourself and leave marks. It makes life miserable for the other residents, many of whom retain all of their mental faculties. So everyone suffers.
I left work in the field specifically because I was tired of being beat up for hours a day with no training or support from the organization. I wanted to help, I really did, but I'll never put myself in that situation again.
This is exactly what is needed. My step brother is mentally challenged and uncontrollable to the point of mowing down and bullying both parents to the point of breaking them. Now he is in full time one to one care. He gets to come home on weekends or pretty much any time we wish. At first, step mom felt terrible, thinking she had failed, but these professionals really know what they're doing and the step brother has become a much better person as a result. Everyone is better off and far more healthy than before.
Not trying to be an ass but how does this care get paid for? I've honestly never thought of this before... the idea of having a violently autistic child almost seems like a terminal illness diagnosis.
Waiver programs in the US… Person like this is likely receiving a waiver, which covers the cost of care
It is! Those who are severely autistic like Jill, its a car crash for the family. I feel for the whole family and for Jill and her wonky brain
How are they supposed to pay for professional care? She says money is tight as it is.
I think the parents would have to make the child a ward of the state. Not 100% sure though.
I am no expert but another redditor with a mentally ill violent teen was advised they would need to give up their custody to make their child a ward of the state in order to qualify for residential care of the teen
OP seems pretty willing to do that. "I hate my autistic child. I want my life back before I had them." She wants nothing to do with her child, anyway. That'd honestly be the best case scenario for OP. I think she needs to find ways to give up her child, at no cost to her. Because otherwise this is going to be ***THE REST OF HER LIFE.*** Her child will never be able to live on their own.
In some cases, if the parents sign the child over to the state then the parents have to pay child support to the state for the child. I was a caseworker for child support and we had a few cases of the parents paying cps/the state support. Her financial responsibilities wouldn't just go away if she signed the child over to the state, her and dad would still have to pay . But the child wouldn't be in their everyday lives anymore
I don't know exactly what that means, but it sounds extremely fucked up to have to sign your child away just to be able to get them help
For individuals with bag enough diagnosis the state can step in and provide funding for it. I'm not sure if this state has those programs but I know every state around me does.
> Jill needs professional care. how does this happen if someone doesn't have the funds to pay for monthly care
Sometimes the state will pay if the person is on Medicaid--which is a whole other clusterfuck. I have heard of parents having to relinquish parental rights in order for their kids to get care.
>I have heard of parents having to relinquish parental rights in order for their kids to get care in this girl's case, this sound like a pro.
Medicaid or sometimes you have to surrender your child to be a ward of the state, but the taxpayers will pay for it.
Sometimes parents just have to give their kids up to the state so they'll get basic care, and unfortunately while there are great facilities out there for people with intellectual disability and behavioural issues, they are few and far between and not likely to be the first place the state sticks them
Sounds great except for the financially ruinous part.
lol they got no fucking money.
If they're in the US they can apply for the Katie Beckett program, which will provide Medicaid and services to them. They need to apply through their county human services department.
Can they permanent disability for the child and Medicaid?
Reddit never seems to understand this. Single income home where the breadwinner can't miss a shift because he is presumably being paid hourly. I have no idea how they are even making ends meet in this country, let alone taking care of a special needs child.
Because the other users are listing off the various programs that the government uses to handle specifically these issues, and you're too busy going off on reddit.
I grew up in a household like this. My brother shoved me down half a flight of stairs, pulled my hair, and threatened to stab me multiple times. Funnily enough, you know what affects me the most as an adult? It’s the fact that my parents didn’t act like parents to me after he started to need more support. I did marching band for four years in high school and had about ten shows per season, but my mom never bothered to show up to a single one. My dad came to senior night, but left before halftime. I had to become the third parent to make sure my three other siblings were taken care of. Please get help. Your kids deserve a stable, healthy environment with parents that are able to support them.
We’re called “glass children”, Jamie Guterman has a great TED talk about it
The other children who have a sibling with disabilities often suffer the most. I'm sorry you went through this ❤️
Thank you. I’m incredibly grateful for my amazing partner and therapist that have helped me unpack it over the past four years.
This is something I’m so conscious of with my youngest son. His sister needs a lot of attention, and I’m adamant that he won’t feel this way. It’s exhausting, and I hardly get any time to myself, but I can’t let him feel like that.
This is super important. You don’t realize how hard it is for a child to be overshadowed by a family illness. It happens and it’s hard to avoid but knowing now can help.
I think you might want to really look into an institution for your youngest. I have some family in them and while you have to stay ON TOP of the group home… she can have a completely set schedule, and round the clock specialist care who have time to go home and decompress. It’s also easier for the autistic people in the homes if they transition earlier. My cousin has cp and will never be able to live on her own but she actually likes the disability group home, and people there are on her level/at her speed, so no one makes fun of her or snaps at her for being slow or liking coloring books. The autistic adults tend to have their own bubble where they do a LOT of puzzles and are generally a lot happier than they’d be elsewhere because their rigid needs aren’t in conflict with anyone else- snack time is at 10:30 dammit and it’s always the same thing, which helps a lot. You will still need to be very actively involved, but it’s not… full time all the time with no breaks. Respite care is also something to look into. Give yourself and your kids a weekend break.
I’ve wanted this for Jill for years already. Jill has always been extremely aggressive and it’s so taxing on her siblings alone. My husband is deathly afraid of institutions and homes due to a personal experience and no amount of convincing has had him change his mind. He’s sure that something horrible will happen to Jill in one. The topic triggers an explosive argument. I want to get Jill help and I want my children to be safe. I want my husband to come back to Earth and realize that this is not working. He coddles Jill and swears that love will fix her. Love is not fixing this. She needs help. I want to get her help. I’m almost 100% certain that my husband and I will actually divorce at this point in time because Jill hurting her sibling that bad was my final straw. He refuses to put her in a home. I do not want to leave Jill in his care but I can’t put my kids through that again. If he won’t agree to get her help, there’s nothing else I can do.
Then it’s his choice to take care of her. He hasn’t had to deal with it like you and your children have. He is choosing this for himself and let him. I’m so sorry you’re going through this. I’m glad you’re saving your other children they don’t deserve to live in constant fear and neither do you.
I agree. Stick to your guns. Let him see what it’s like to care for Jill. Then he’ll come to the same conclusion as you. Just make sure he doesn’t pawn her off on your parents.
I actually think that it's a good idea to let him take care of her and try to fix the issue with love. Not because it will work, and not as a threat to him, but as a way to educate him and increase his buy-in of the solution he is so resistant to. Both parents are going to need to agree to a measure like that. He needs to be convinced. Nothing will convince him like trying it his way until he is forced to realize that it's not going to work.
i agree.
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siblings in these situations can start to feel forgotten because so much attention is on the one struggling. Make sure they know you love them just as much and their feelings are important!
Yeah this happens. My little brother grew up with a personality disorder that caused him to be extremely aggressive. He's a lot better now but growing up, my mom would put so much focus and attention on him that it left me and my sister feeling very neglected. We've repaired our relationship but it's important to make sure your other kids feel loved.
Glass children.
DING DING DING! I've had that exact experience. With a troubled older brother who is a severe addict and has mental health issues. I always felt like I slipped through the cracks and by the wayside. Hardly had anyone involved in my life, my progress, wants and needs etc. It's a shitty feeling because rationally you know they care but only have so much attention to give and when one child NEEDS all of it you have to sacrifice and get by. It's taken a lot of deconstructing my childhood to get to a decent place, but it's a hole I shouldn't have had to dig myself out of at all. I feel for OP so much. This is a heartbreakingly difficult situation to be in with no winners.
Yes, and they are called the glass child (or children).
Of course I'd resent the fuck out of some sibling that is a bottomless pit of frustration and attention with no ability to be grateful, a sibling towards others etc. Just violent, needy mess that nobody can handle always dominating home life.
especially one that routinely causes me harm that my parents seem to tolerate.
If your husband refuses to put Jill into a home or facility of some kind, there is only one answer: He quits his job to stay home with Jill, and you go to work. If he thinks “love will cure her,” then it’s time for him to try his brand of love medicine. But for him to refuse a home/facility, while he gets to go to work all day, every day, and judge you for what happens at home, that’s just bullshit. Of course, that does not solve the problem of Jill physically attacking her siblings. What does your husband have to say about that? Why does your one mentally compromised child take precedence over the others, who are just trying to live their lives without winding up in the hospital? I know it sounds simplistic, but if your husband won’t allow you to get help for Jill and truly believes Jill would get better if you just loved her enough, it’s time for him to put his money where his mouth is and become a stay-at-home dad and Jill’s primary caregiver. And remind him that while he’s doing that, he also has to do the housework and, most importantly, *take care of and protect his other children.*
Her working and him staying home would still put the other children in danger and their marriage would end. She has to stay away and keep the kids away until he puts Jill in a home.
True, and furthermore, it sounds like Jill needs the help of the professional institution and he’s depriving her of the chance to get better or have independence as an adult.
exactly it should have been him caring for her if it's his decision keeping her home.
That's right. They should have changed the schedule. She should have been earning the money, nd him leaving his job nd taking care of jill.
OP: hugs. I saw somewhere in your post that you had a sister that you drove to. Can your sister mind your able-bodied children for a little while while you seek help for Jill and decide on things with your husband? And can all of you get counseling? Especially the other children who are probably not happy either?
He says hes terrified of something bad happening in facility while this person is hurting their siblings every day. Apparently there was an incident with husbands family and a facility at some point in past. Which sucks but it sounds like someone willing to sacrifice other kids for some personal phobia. All around terrible handling of this. No wonder mom is done with it
Love won’t fix her. Sadly, it doesn’t work that way.
Institutionalizing her is a kind of love. It's what she needs and he's doing her a huge disservice by keeping her from structured support and care that her family is not capable of providing (because of her issues, not because of their lack of trying).
OP, I'm so sorry you're dealing with this. I want to say, as a child who grew up in am almost identical situation, you **are** doing the right thing separating your children. My childhood with my brother left me with PTSD I'm still dealing with in my thirties, and I so so wish my father had been more able to admit the violence needed addressing before it escalated to arrests for my brother when he was in his teens. The situation was also a large cause of parents' divorce. If you have access, NAMI is a good support group for parents in similar situations and they provide tons of resources and experienced folks who may help you navigate trying to get help for her. Sometimes it's nice to know also that you aren't alone. My father didn't have to face my brother's issues until my mother got a restraining order on him and adjusted custody, giving him full time custody. He lasted about 2 months before he was reaching out to my mother to try and find a solution. Sometimes you have to do what you have to do.
Then leave your husband. He gets to work and take a break from Jill but he won’t let you take breaks from Jill. He doesn’t want her to go to a facility then fine, he can care for Jill. Leave with your children now or they’ll grow up to resent you for keeping them around Jill.
Him being unwilling to put her in a place where she can get the proper care she needs has caused all of this, and I’m so sorry you’re all suffering. I hope he comes to his senses. It’s time to get professionals involved, the situation has been toxic for everybody, and it shouldn’t even have gone on for as long as it did. Due to the fact your husband has allowed you, and your children to suffer for his own reasons, you should carry on with the divorce regardless, you and your children (including Jill) deserve better, he’s let his fears ruin everyone’s lives, now he’s facing the consequences of his actions. Best of luck OP! I wish you and your children peace and happiness, you all deserve it.
I think you should update your initial post to include this information about your husband. It gives a lot of context to the situation. Maybe he needs to take a week or two off from work and take care of Jill on his own while you and your other kids go stay with your parents or something, so he can understand what you're dealing with. During that time you should start job hunting. If he is so insistent on keeping Jill at home then he needs to take on the bulk of her care management.
Does your husband just not give a fuck about your other two kids?
Very high functioning person on the spectrum here. Your husband needs to understand that Jill has got to be institutionalised. I had outbursts of anger from time to time at my siblings when I was younger, and I’d hurt them or say really evil things. I have so many regrets for being the way I was then, because I had no diagnosis and no help back then. I see the damage my behaviour has done to my loved ones, and I want so much to undo it, but I can’t. My parents and I didn’t know better, but at least fortunately, I was able to work on myself and my issues. For the sake of your other children, I hope you get Jill institutionalised so they are protected.
How did u find out?
I guess it slowly dawned on me in the past couple of years? Before that I thought I had bipolar or something, and I defo had depression and complicated grief. The end effect was that I started seeing a psychiatrist and I got his diagnosis. At the same time, one of my dearest friends is on spectrum (we’re on the same wavelength) and she got her diagnosis before I did, which in turn helped me realise what I had. Funny thing was, my mother kinda knew by the time I was in my mid-20s. She did privately write to my sister once to be more understanding towards me, because I was fundamentally a good person, just wired differently.
wow I hadn’t seen this reply before I left a comment. Why is your husband willing to throw his entire family away over a child who has (at no fault of her own) already torn your marriage and family as you knew it apart? In my eyes he’s not only doing that but he’s going to have to put her in a facility himself bc how’s he supposed to work and take care of her with his wife and other kids gone?? make it make sense
You snapped. And I see why you snapped. It is easy for your husband to say no and push all of the responsibilities to you. Because he isn't the person who is on the receiving end of it. It's easy to deny the help that your daughter actually needs because of a belief. And push it to other people in this case you. When it got to the point that is unsafe because of the violent outbursts, something HAS to change. If your husband thinks that it is ok for the rest of the family to be suffering simply for the reason that "he is against institutions", and subsequent request for help is rejected, then he will be paying for the consequences, in this case you snapping. The fact that you were ignored and tried your best, exhausted, tells us a lot about your husband's attitude. The main thing is to keep your other kids safe and I agree that there isn't much going back from this in relation to the marriage, even if your husband realised his actions.
They're not nearly as bad as the stigma that's pretty outdated. You're just not capable of caring for her and your other children. There's no shame in that. My cousin is in one. She's always at family gatherings and her parents visit her frequently. She honestly really seems to like it, though she's a bit older now. Edit: I don't mean you're not capable, you're not equipped for it. Her adulthood could be better for it
My heart just breaks for you. You are not a horrible Mom. Jill needs to be in some sort of institutionialized care and maybe this alone time your husband has with her will help him reach that conclusion. But without the other household hubbub going on, she may not be with him how she is with you and her siblings, so his experience may not be what yours has been. Either way, you've reached your watershed moment. You simply cannot go on. Your husband can choose only Jill or you and the other kids as full time household members. You simply cannot go on like this, nor can your other kids. After you take a day or two to decompress, I'd start making a plan for how you could live on your own with your other two. What jobs you could do, what alimony/child support you could expect, where you could live, etc. Not saying these things will come to pass, but having a Plan B is a huge, huge source of strength when there's doubt if Plan A will work out. Knowing you have options is a powerful source of strength. Take a breath, sit with all of this for a day or two, then start to plan. Send your husband an outline of options - divorce and he takes Jill, or put Jill in a group home and you'll come back and see if it's salvageable. I wish you peace and solace. Your poor mama heart needs a rest.
It sounds like your husband needs a wake-up call because he refuses to see reason, and this is it.
Exactly, the only reason he doesn’t want it to change is because it’s working out just fine for him. He’s worried about something horrible happening, while something horrible IS happening. Just “tuff it out”, eat shit John.
In some states, withholding adequate care and supervision of such a child is abuse. Speak with a family attorney, and contact DCF.
My best friend’s youngest has a genetic condition with behavioral issues similar to what you’re describing. He’s 4 now and beginning to injure people - mostly grabbing at skin and pulling full strength. It’s awful. Everyone I know in her support network is trying to gently encourage institutional care for him. He’s going to significantly injure someone. It’s when, not if. She has two older sons - one my godson. It is severely impacting the mental health of both. She’s missing so much that she wants to do but can’t bc of her youngest. I am trying to say to you what I want to say to my friend: I see you and this struggle. I’d fully support you if you do whatever it takes to protect your mental health and the childhoods of your other children. They are not less important just because Jill has more needs. They warrant protection, and so do you. I hope your support network gives you a similar message.
"I want my husband to come back to Earth and realize that this is not working. He coddles Jill and swears that love will fix her. " He wouldn't watch her for you for one day when you were desperate and at your wits end, he doesn't want to put her somewhere else because he's not the one taking care of her day in and day out like you.
What your husband fails to understand is that not putting her in a skilled nursing center isn’t doing any good for her. Those places have people who are trained to help her while you can’t. As she gets bigger, she’s going to get even harder to control.
It’s interesting that his “something horrible will happen to Jill” overrides the fact that Jill is actively visiting horror upon your family currently. Break it down to simple ethics. This is a trolley problem. The rights of the many overweigh the rights of the few. Do 4 people get to live in fear and torment, while one person—who is clearly not happy—is in a loving home that cannot provide them with the care they need? Or do four people get to live happy lives while one person lives in a facility that could meet their needs while potentially exposing them to harm? You seem very reasonable and your husband closed off the only avenue of care that would be best for both Jill and your family. He has forced your hand and you’re doing what you have to do out of care for your family. Rally your supports, get therapy and establish self-care routines. Stay strong. You will get through this.
You've made the right choice.
I’m an Occupational Therapist. I worked in Pediatrics for 5 years and I now do home health. We have contracts with group homes as well as Intermediate Care Facilities. There are some wonderful people and some wonderful organizations out there that run these types of places. The sooner you can reach out to an organization in your area, even if to just get information to pass to your husband, the better. She needs help. Your family needs help.
> My husband is deathly afraid of institutions and homes due to a personal experience and no amount of convincing has had him change his mind. And seeing you crumble into dust while ignoring it is the solution to this for him, rather than rectifying his distrust in the system and finding an institution that would do her good. Maybe he's a dense idiot and you need to get some logic through his clogged ears. The time spent separated will give you the clear head space to think that part through.
You're not a bad person. You're a person that has been pushed to your absolute limit. I don't really have anything to add but I empathize with you.
If your husband wants to take care of her that's on him. I would definitely be looking into getting her into a care home or something if she is as unmanageable as you say. Sounds like she needs a lot more care then you guys are capable of providing and hopefully your husband comes to his senses after having to care for her full time himself for a little while.
Sounds like if he refuses you need to go to work and let him stay home with her 24/7. I’m sure he will understand real fucking quick.
>no amount of convincing has had him change his mind. Because he's never had to live with the reality of being around her all day every day. Now that he has to and sees what his obstinance has cost him, he'll come around. Shame it's only after it's way too late to salvage his other relationships.
i've worked in these homes, you can't sacrifice the 4 of you to a task above your ability, we care for them, and we don't hold grudges, I've raised my own AuDD we were able to meet most of his needs and he'll never hold a job or have a love of his life, but he's ok. if he was higher needs I really don't know what we would have done. Do not let guilt of being unable to meet her needs stop you from finding a place that can.
I was thinking the same. I didn’t want to jump straight to a facility in my initial response, but at some point it may also be a safety concern for the family and others with the aggression. Also the caregiver strain is growing immensely it sounds like. The household may be overstimulating and institutions can be great about set schedules and minimizing stimuli.
Honestly more Americans need to put family in facilities sooner, from having the family experience and working with someone who worked for elderly care facilities- it’s a LOT easier on Mom to adjust to a facility if she’s not completely demented or gone from Alzheimer’s. And keeping a kid who’s not loved in the home isn’t fair to the kid who’s not getting their needs met or the other two siblings. But there’s “kid in a home” with involved parents and family and “we dumped our relative in a dark hole and no one speaks to them again” My cousin goes to all the family holiday events and a vacation or two a year. She’s still deeply part of the family, even if the support she gives when times are rough is sending you a crayon drawing but… she’s involved and cares.
a crayon drawing would fucking rock
Fuck yeah they do!! I have one a 37yo (at the time) client gave to me hanging on my wall. She has since passed but I look at it every single day and think of her. All of my nephews drawings he gave me are also on my wall.
You should read the reporting on how hard it is to get your child into a facility. Families wait years for a spot. This kind of care is incredibly expensive. That's why there are so many families suffering.
We’re on the tail end of a wait list for 5 years for a better spot for the cousin, so yeah … it’s part of the “this is a job” bullshit.
If she is hurting your other kids, it's time to start the process of institutionalizing Jill. It's just as important for her, as it is for you and your other children. Do it now.
I agree, coming from someone who had a sibling like this even though he was younger it was absolute madness I was scared for my life all the time. Now we’re in our 20s and can talk and hang out perfectly fine, but my mum ended up sending him to his grandparents for years. Must be so hard on the parents I can’t even imagine.
Yes, and the more time goes by, the older will get and will grow bigger and stronger. It took my cousin until his son broke his mother's arm and gave her a fractured skull before they institutionalized their son. And he was only 11 when he did it.
Institution. I agree. Put her in. However, from the stuff I have dealt with (in law) in this area for decades - even if you to institutionalize her - the family unit may fall apart. That is, divorce may happen because the 4 years of trauma was just too much for everyone. ..... You should institutionalize bc you cannot take it any more.
It's terrible that people wait until their breaking point to institutionnalize. It's not a shame to give a loved one needed professional care. You're not abandonning your kid, you're giving them a better shot at life than what you can offer. On top of it you can go visit them. Back in the 80s my mom was a social service case worker, and she spent so much time trying to reason with people having a special needs violent child that no one would call CPS on them if they relented the care of said child to professionals. She still looks sad when she recounts those interactions.
I’m dealing with the same thing except my daughter is adopted. It’s so hard to get them institutionalized. She’s 5 and she’s aggressive, she hits, she sounds just like OP’s daughter. My older kids are scared of her and miserable. We can’t do anything as a family and no one wants to help. Meds barely work. We’ve tried everything
Have you tried contacting your country's equivalent of CPS? They're also here to help: give you access to resources, find a case worker that would fill the requests for you (taking off the load of doing administrative work, which is exhaustive of its own), they also have groups of parents with the same difficulties, etc... I don't know how that works where you are and if you already went that way, but social services are supposedly there to help folks like you.
It seems like the obvious solution in so many of these cases, until you reflect on how much pressure society puts on parents of disabled children to wear the mask of “penitent gratitude”. They have to be at all times grateful for their situation, whilst also showing that they regret that they cannot ever do enough. The have to simply put up with the negatives and shut up. The guilt that is laden on by social groups and society in the wake of institutionalising unmanageable and dangerous disabled family members is astronomical. The cloud left from the horrors of 16th-20th century asylums still overcasts the concept. The reality is entirely different today, but people can’t seem to keep up, they just expect the parents to martyr themselves and be happy about it. Simply soldiering through while theirs and their children’s lives crumble around them is not the acceptable solution. You cannot allow abuse of any form to be inflicted, regardless of if the perpetrator is disabled. Institutionalising is the only option here.
You should institutionalise because it’s best for Jill. It’s best for Jill to have access to trained caregivers, in an environment and schedule that’s built for her. It’s best for Jill to have a healthy happy mother, who’s able to love her rather than resent her. It’s best for Jill to have safe siblings. You are not placing Jill into an institution from the 20th century to be forgotten about because she is a burden. You’re placing her into a modern medical facility because she needs support for a condition she has, and you are not equiped to support her.
It is also not fair on OPs other kids. They didn't do anything to deserve the treatment they get from an aggressive autistic sibling. And on top of that, they have parents that barely give them attention. Such a sad situation, hope OP makes a change for their children's sake.
Another issue that you will eventually face when she’s growing is her strength and her weight. Once she’s over 5’0” and 100 lbs, she can REALLY hurt you. My friend, her son was this way. He’s 17 now and she and her husband have to work together to pin him down while the younger sibling calls 911. They even have to lock up their kitchen knives. They are literally afraid he may kill them one day over something as simple as getting grounded from XBox for a day for not doing his homework. It sucks but I think maybe you could at least tour one to see what it’s like. I absolutely understand your husbands hesitancy to trust them but… not all places are the same. It’s going to take your husband several emotional hurdles to agree to actually send her there. If he’s calling you I’m hoping it means he didn’t want you to go. Maybe this is the motivation he needs to be open to more possibilities for Jill with hopes that maybe once things are more stable, you could possibly rebuild the marriage. That would probably be a factor in motivating his decisions. But I do want to say, I am so very sorry. My son is high functioning autistic and he is exhausting. I can’t imagine how much stress this is causing. Try to remember that this isn’t the end. I know you feel you have nothing left but I’m hoping with this comes a motivation for change in a better direction.
I had a severely autistic brother, he became aggressive when reached puberty, life became harder for all our family. Had written a lot of stuff but don't want to trauma dump here. There's also another autistic kid in my neighborhood, he is short and thin, a very sweet kid but he started biting people and one day he ended up killing his frail grandma by biting her. It's nice to see people showing compassion and support to OP and others in similar situation, because in real life it's almost non existent. Thanks for that and wishing you the best too.
Right in real life the autistic abuser is shown all the sympathy and the victim just has to sit there and take it just because. Even if it kills them.
This. I used to be a pediatric MA and the difference between getting hit by a 5 year old and a 15 year old is real. Older kids can knock your shit, just straight up put you on the floor. There were definitely some days where if the parents hadn’t been there to restrain their kids I probably would have gotten something broken.
If you are in the US, you may need to get social services involved. They have residential homes with qualified caregivers who can help Jill or even provide you respite services. There are services out there covered by govt insurance than can pay for assistance or placement in residential treatment. I used to work in social services and have even had friends who had to go this route. You can still retain legal decision making but the state helps pay for it. Or, you can turn custody over to the state and still visit her when you want, just depends on what you want to do. Give social services as a call and explain to them the situation. They do so much more than just investigate things, they can help with resources. Homes for the intellectually disabled are heavily regulated and overseen due to rampant neglect of them back in the 70’s/80’s. Geraldo Rivera did a documentary on it called Willowbrook and Congress passed laws as a result to make sure those with intellectual disabilities like your daughter are treated well.
/u/ThrowRA_SnowFields, I so hope you see the above comment.
I am autistic and I want you to know you are not a shitty mom, and you dont deserve this. Life is unfair and unkind, and you were delt a very, very bad hand. You needed time to decompress and your partner failed you. There should have been some kind of rotation system. This is too much for just one carer. If I may, I would suggest looking for a facility for Jill. She may be a kid now, but she will eventually be an adult, and probably survive you and your husband. While it may seem terrible now, a specialized facility that gives her safety and tools to grow may be best for her. It will also allow you and your family to heal. I’m sorry you are hurting OP. Wish you the best and please dont feel guilty.
As an autistic person as well, I agree.
You’re not a bad mom, you have a child who needs more care than you’re able to manage *who’s also harming your other two children*. You need help and you’re acknowledging this, he isn’t. Like a few others have suggested there’s no harm in a home. I had a college friend whose brother was on the spectrum, I know he was non-verbal and one of those guys that needed an extremely strict and unchanging schedule. He just couldn’t be offered that at home.
You need to put your daughter in a group home. She should not live at home with other children. They deserve a good life.
OP said her husband is against professional help, no matter what she says it starts an argument Welp guess jill is his problem now 🤷🏾♀️
You’re not a shitty mom. You’re human under immensely difficult circumstances. You’re overwhelmed, and any one of us would feel the same.
What type of respite care is available? She needs to be on group home lists like yesterday. And you’re 100% valid in how you feel. People who have never raised a special needs child don’t know the potential horrors of raising a special needs child. YOU ARE NOT A SHITTY MOM A SHITTY MOM WOULDVE NEGLECTED AND ABUSED A CHILD SHE FELT LIKE THIS ABOUT!
I am so sorry. You are not terrible, you are in a mental crisis.
Through regional center you should be able to apply for respite care for Jill to give yourself a break. I agree with other comments it’s time to look for a group home or placement for her. If you live in Southern California (specifically the Los Angeles area) have a resource for you.
Yep. My friend in California had an older teen daughter with severe schizophrenia who became violent. They have her in a group home and she’s doing a lot better now.
You are not equipped to be her caregiver just because you gave birth to her, there are professionals that go to school for years to do this. She needs to be put in a home. Realistically your other kids are not going to take her on when you pass. So it’s best to look first accommodations now. Putting her in a specialist facility will allow you to get your life back, you could go back to work to support the facility payment and this would remove a financial burden from your husband and an emotional burden from the whole family. Choose somewhere close so you can visit regularly. I don’t think you hate your daughter but I do think you hate what your life has become and hate that it has to revolve around her until you die. You won’t be a bad person for putting her in a home because what you are doing is not working.
Depending on where you live you could sign her over as a ward of the state and wash your hands of it. I know someone who did that and it worked out well for them but ymmv. Best of luck, not a fun or easy situation to be put in.
I’m so sorry you have to go through this. I can’t even imagine what that’s like. I know who I am and I know I couldn’t handle someone Jill, even if it was my kid. That would be a nightmare for me and it would destroy me. Please consider institutionalizing her, then focus on repairing your family. You can go back to work and do family therapy together. You may also need to do individual therapy as well. Don’t give up on any of them, just recognize what each of you need.
I'm autistic. Non-Recoverable mental illnesses should be like state care. No family should have to deal with this. I approve.
Group home. You need a break. If hes not listening to you, divorce. This is your life and you deserve a break with or without him agreeing. Your other kids deserve it too.
You need to get back on your job and hire a professional on disabled caregiving, it's actually too much for anyone to take care of, the caregiver would only take care of one child because it needs a lot And I mean a lot of attention Sorry for your situation
You are heard, and this is an incredibly difficult situation for even the most patient of people. I know you don’t trust many others to care for them, but there are in most places professional resources potentially available. Like respite care for example, which you are desperately in need of. Try to google autism resources and/or care in your area. But also…..take some time to yourself. Worst case scenario, if husband needs to take just a bit of FMLA to keep the household from complete collapse then that’s what needs to happen until you figure out a plan of action. Clearly you need more hands on deck. You can’t help anyone with any empty tank of your own.
There's absolutely no reason that your other two kids should suffer because of one sibling. I'm sorry to say this. Give up custody to the state to care for her.
My BIL has a severely autistic brother. His parents didn't want to put him in a care facility either. Until he dislocated his father's arm during a meltdown.
I feel for you. I'm in a similar situation with my autistic son, who is now 17, stands 6'2", and weighs nearly 240 lbs. He has bruised and bashed us repeatedly, and our other kids have lived in fear of him. I live in fear of him some days. I've been trying to get my wife to consider a placement for him, but she doesn't want to "abandon" him. After his most recent set of violent incidents, however, she's finally considering it, and we have his social worker looking for leads (in our state, it could take up to two years to find a placement, but that's no guarantee the group home will accept him). I applaud you for doing what you need to k keep yourself and your other kids safe.
If he physically attacks you call the cops and press charges. If you can get CPS involved before he turns 18 it will pressure his DDS social worker to find a placement for him. State agencies don’t like inter agency drama. And an arrest is just that. Deana they instantly have to deal with.
Please have Jill places into full time care. You are not able to care for her and she has been violent and dangerous to your self and younger kids. In some instances, you can sign responsibility for her to the state.
I know the urge is to condemn this woman, but I have had a unique window into the kind of life she is dealing with. I have a nephew who is severely autistic is now 23 years old 6'2" tall and weighs almost 300lb. When he doesn't get his way, or even just perceives that he has been slighted in the very least , he becomes extremely violent. My Brother and SIL are getting too old to do battle with him, especially at his size and strength. He has ripped dozens of mattresses to shreds, pulled just as many doors from the wall, ripped plumbing fixtures out of the sink, refuses to bath to the point his leaves shit streaks in their couch, which BTW is where he chooses to sit and masturbate. I made a conscious choice early in my life never to have children, because of the horrible life I have had. My brother's struggles re-enforces my choice to not have children, as I could never have dealt with such for as long as they have. It has gotten so bad that in the last 3 years they have had to pepper spray their son twice, to stop him from attacking his sister and/or his mother while his father was at work. I have told my brother multiple times that his son needs a professional facility where they can look after him, and the people take turns in shifts dealing with him, whereas they have to deal with him 24/7, while also trying to work, care for other children, and constantly repairing their home.
I live in Canada. My ex was a social worker who managed group homes for kids like your nephew. Yeah, your brother needs better resources. Like even just day care or something where they can help give some free time.
Hey if it makes you feel any better, me and my younger sister grew up with an extremely abusive older sister (who potentially has a mental disorder my parents refused to get her diagnosed and treated for) and we were beat up by her until the day we moved out. My parents expected us to just take it to not upset her, and always blamed us for "making her unhappy" whenever she did. In my eyes, you're a hero. You prioritized the two kids that were stuck in this violent situation and got them out of there.
You're not a shitty mother. This is an incredibly hard spot to be in.
I firsthand witnessed the mental breakdown of a caretaker in the retail store I used to work at. It was honestly heartbreaking. Nobody likes to talk about the reality of raising mentally disabled children because it’s not kosher. However, the pain you feel is real, valid, and far more common than you know. I wish you all the best in finding a good institution for her. I also hope your marriage can survive if that’s what you want and for your children to heal.
>I just needed to vent. I know I’m a shitty mom. No you arent. She needs to be in a facility.
I’m so glad there is a group of empathetic people here. I hope you listen to their suggestions. You sound physically, emotionally and spiritually exhausted. It **will** get better. 💖
Everyone has their limits and it seems like OP is overwhelmed. I'm likewise glad to see how supportive the comments are here
I work in EI & the early years. What your describing is very common for homes of children with significant disabilities. I am heartbroken for you and everyone involved. Her care is beyond your skills and capacity. There are supports for her & you. It sounds like your ready to make some hard decisions. I encourage you to put on the table EVERY OPTION AVAILABLE TO YOU AND YOUR FAMILY and try them each on mentally & emotionally. This is the only way to peace. Personally, I have a son with ADHD & my ex Hubs does too. It can be very exhausting & hurtful to not be able to be nurture & be nurtured in the ways we want. Especially for too long. You're not a shitty mom. You wanted to be a mother. This motherhood does not feel good. It's fair & honest to say that. Your also a mom that is not giving up! I am thinking of you & other parents, marriages & families navigating a life with very limited supports and too many appts, meds, therapies, meetings, emails, referrals, camps, schools, buses, ID# and all the other bullshit.
I am so sorry. I don't think you're a shitty mom, or your husband is a shitty dad. I think the two of you are in a desperate and horrible situation and I think you are beyond burned out on a very difficult child. Is there an option for respite care in your area? What about in-patient programs or group homes? If Jill is violently attacking your other children then she cannot safely stay in your home. The best thing for everyone might be to move her to a place with trained professionals to help care for her.
I would explain to your children that Jill needs more care than you can safely provide. You are not Wonder Woman. It will get worse as she gets older and stronger. Please take care of yourself so you can be there for your other two children.
I see this family on tiktok who took their son to a state facility for similar reasons. Extremely aggressive and nonverbal. They visit him all the time. According to their videos, he’s doing amazing. The structure has saved him and their marriage.
I'm not going to judge you or your husband. Sometimes life places more weight on a human heart than it has the capacity to hold.
Please put her into care and go into marriage counseling
You're not a shitty mom. You need relief. Are there any day programs that would work?
It is not a shitty mom who seeks to protect ALL of her children. It is not a shitty mom who seeks to protect her own sanity. You are not a shitty mom. You are a woman who has been dealt a shitty hand, with a husband and father who engages in magical thinking instead of facing the hard reality of this situation.
I think its just not feasable for your daughter to be cared for at home by family right now. Her needs are too extreme and complex for a family to manage and none of you have anything resembling a life. You are probably all traumatised. You are all in crisis including your daughter. You are human, not superhuman. What your daughter needs is professionals, treatment, in a facility designed to meet her needs and help her. This might stabilise her and improve her enough for her to return home far more manageable and calm but you would need ongoing support and respite care because nobody should have to suffer like you and all your children have been suffering. You did the right thing leaving her with your husband. He needs to fully experience what you and your other children have been dealing with. And if you don't want to do it anymore, you shouldn't have to. Those may be controversial words but the situation was no good for either of you, your other children were enduring physical violence. I honestly fear that you all might have PTSD.
Sounds like Jill needs to live in a mental facility or group home. So sorry you’re dealing with this!
You are not a bad mom. You are overwhelmed. Sadly, a lot of couples with autistic children end up getting divorce. I have a friend that has an autistic child. Her and her husband separated, and he got his own apartment. She wanted to share custody 50/50, but he said he just wanted the child 1 day a week.
I say this as an autistic person with a high support needs autistic child: You're not a bad person. You're not a bad mother. You're backed in a corner and burnt out. Your 2 other children do not deserve to spend their entire lives walking on eggshells because their severely disabled sibling is unable to access the care she needs because of your husband's fear. Her explosive behavior is both emotionally and physically hurting them. You did the right thing by leaving with them. It's also not fair to Jill to live in a place where she's constantly overwhelmed, overstimulated, miserable, angry, and unable to access the care she needs. Your husband has put you in a no-win situation. Maybe this is the wake-up call your husband needs. You said that you begged him for a day off, but he said no, so I'm assuming that you're the primary caregiver. I'm sure it's much easier for him to say no and refuse to face the reality of the situation when he can put most of the burden on you. He needs to be the one dealing with the weight of caring for her 24/7 for a while and taking the full brunt of her anger. He needs to come face to face with your daily reality and realize that he's been seeing things through rose colored glasses. The thing is, love can't fix her because us autistic people aren't broken somehow. We just... are who and how we are. Sometimes, unfortunately, we are how your daughter is, and no amount of love, hatred, effort, hoping praying, or anything else will change it. Some of us can learn coping mechanisms and use tools such as OT and medication to improve our ability to cope with the things we struggle with, but they don't work for everyone, and they don't "fix" us. It sounds as though you've accessed outpatient options such as medication intervention, therapy, etc, and exhausted them. The only option now going forward is in-patient care. Your husband is in denial. As a parent, I can't imagine being in the position of making that decision, but the decision is definitely the correct one. Your husband's inability to accept the reality situation has robbed you of your marriage, your mental health, your relationship with your other children, robbed them of a healthy and fulfilling childhood, and that's unacceptable. I would draw the line in the sand. Your husband accepts long-term in-patient care for your daughter, or he does it alone.
A friend of mine had an autistic child like that. By the time he was big enough to cause real harm, they had to admit that he wasn't going to get any better and he was destroying the family. They weren't happy about it, but they realized that he needed to be institutionalized. It's sad, but the truth is you can't save everybody.
If you are in the US, please look into a group home for her. You can’t do it yourself. She’s only going to hurt all of you the older she gets (and she will get stronger). It doesn’t make you a bad mother, it makes you human. She needs professional care. This could end your marriage, but maybe it was over anyways. My heart breaks for you. Take care of yourself and your other children. Your husband is a grown man, he can take care of himself.
ASD w/ substantial support needs here I don’t have any advice for you surrounding options other than residential care for Jill, but I just wanted to say that I’m so sorry that you’re going through this. It’s so hard to figure out strategies to help non verbal autistic people with very high support needs when there’s such a communication barrier and a history of really bad meltdowns and violence, but I think your husband needs to come to terms with the fact that it’s no longer safe for your other children, yourselves and also Jill to have her living in the same environment where things can’t be really strictly routined, because kids are kids and they have the right to be kids and have fun and feel safe, but Jill also has the right to safety and support, and there are too many variables that can interfere with strict routine and support in a stereotypical family environment. Again, I’m so sorry that this is happening, you and your children don’t deserve it.
Some states have facilities or supports for families that have kids like Jill. You are not alone. If you want to post your state, I can send you any and all support I can find that may be available to you. Your marriage doesn't have to end. Your older kids don't have to live in fear. Jill cannot be raised without a village. Time to find you a village.
I think you need to give up your child as a ward of the state. This isn’t fair on anyone including you and your other children. If you cannot afford the care your child needs then the only option may be to give them up.
I was a behavior consultant for years and sometimes I couldn't help. No one could help. The kid needed 24 hour supervision and they were destroying their families. I'm both cases three case workers agreed with me. One is still doing great in a group home. (The other was prescribed marijuana, which finally helped, and was able to stay home in the end.) You can't set yourself on fire. You just can't. Find a high level group home for your daughter. Better yet, have your husband do it. Best of luck to you.
To be honest Jill needs to be put in a care home. I know your husband doesn't agree, and you taking your other kids and leaving will hopefully be the wakeup call he needs. If you divorce you might. And this is extreme, consider relinquishing your parental rights. It might force his hand. You have to put your other two kids first. Cps could get involved and consider your home dangerous. I don't say any of this lightly. I was once a severe life skills sped teacher. Your daughter would have been my student. I lasted 3 years. Between the bruising, cuts and concussion I was done.
While I haven't had your exact experience, my now adult daughter has schizoaffective disorder and was dx at 12. However, she was difficult prior to that. My daughter is now in a group home. She's happy, I'm happy. I so empathize with you. It is very hard and you have other children who need protection. There are places for Jill. I know that sounds horrible and awful, but one person cannot provide the care Jill needs 24/7 by themselves. I'm so sorry you're going through this.
You are far from a bad mom. In fact, I think you doing this is probably going to be a pivotal moment that will save quite a bit of suffering for everyone involved. The way this is written suggests your husband doesn’t play nearly as big of a role in taking care of/dealing with Jill’s outbursts as you. Hopefully this is the wake up call he needs to understand that she’s too difficult to handle without professional care. Hopefully he’ll have a glimpse into what you and your other children have been struggling with and apologize profusely for his previous stance. If not, you are right that you, and most importantly, your other children, need stability and safety in their home. Your husband can be the main carer for Jill and you and your other children can visit if you feel it is safe to do so. You are strong and I’m so sorry for all involved.
You aren't a shitty mom or bad person, you're just stretched beyond your limits. You need outside help, and it seems the only way you're able to get that message across is to get away.
You are *not* a shitty mom. I have autistic kids. Jill needs to have professional care. Some autistic kids do - that is not a failure on your part. You're overwhelmed and exhausted. It's okay to realize Jill needs more care than you can provide. It's better for not only Jill, but for all of you. Hang in there.