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Lost father and husband

Hi there,

I'm been in a relationship with a woman for 8 years now, living together for 7. I met her and we became friends when she was running away from an abusive husband. She had two kids, two boys. They were living in precarious conditions, so after we had been dating for a while, I asked her to move in with me.

She was diagnosed with Anorexia, Generalized Anxiety Disorder, PTSD and later, BPD (Borderline personality disorder). While this explained some of her suffering, she always suspected something else would fit better. And she suspected Asperger's, and only recently some profesionals have confirmed her suspicion. She can't work because the kids are very dependent, but she's always busy with their things and taking care of the house.

The kids were both diagnosed with very severe ADHD, and later some unidentified behaviour dissorder. Two years ago, with the COVID quarantines the older kid started retiring from social life. It reached a point when he didn't leave his bed, didn't showered, didn't changed his clothes, and of course, didn't go to school. His therapist gave us some advice, or medication and then set an appointment for 2 months later. The school didn't help. Things were getting worse and worse, and we didn't get any help.

So when things were very scary, we took him to the ER, he was 15 years old. And he was hospitalized for 2 weeks. During the next year, he has been diagnosed with asperger's and epilepsy, mainly, and depression, agoraphobia, they found some brain damage and a genetic anomaly.

He is the center of our life. He's gone to school some days, but we are told he does nothing at all there, and at home we know he doesn't. This week he's not gone at all. He goes to a day care center 2 days a week. And he might go to another one for the whole next school year. He's a model patient there, does everything they ask him. But at home he's in bed or asking for some screen time without a rest. He shows an adict behavior towards his screen time, it started with videogames, then watching anime, and now reading fan fiction.
Any tast from their therapist, and any task we ask him as a member of a household, we need to fight for it. Even when he goes to school, or showers, is only after insisting and insisting on our part. He gets violent about it, and we even had to call the police once. And he's been hospitalized 2 more times in the last year.

His little brother, 11, is angry and anxious all the time.

All in all, living there is very hard, with discussions everyday, a lot of work, and no appreciation. And we don't see a light at the end of the tunnel.

That's our story in a nutshell.
 
Welcome. Thank you for introducing yourself.

The situation you find yourself in is not that uncommon, unfortunately. These issues at home become more critical as the child gets older, bigger and stronger.

Have you looked for help from any programs for people with developmental disabilities? If you are in the US most states have such programs. Google developmental disabilities with your state name. I have been working in one such program for about 20 years and can try to answer some question.

I’m sorry you are all having to go through this. I understand it Is hard on parents and especially difficult for your other child.
 
Thanks a lot for your reply. I forgot to mention we live in Europe, I'll omit the country to keep some anonymity. English is not my 1st language, so excuse me if I don't make sense sometimes.

Here it's a long bureaucratic fight, both the teenager and my loved one have strong disadvantages to function at school or a job. The 11 yo. shows a lot of signs of autism. He does good at school, because it is still easy and he can get by without studying, his brother did the same, and got OK grades, until this wasn't enough to face school and social interaction. We are on our way to get more help, trying. We are grateful for the daycare place. But we don't know what he does there. At least he likes it.

The thing is, S16 has perfected a social mask, to the point that most specialist send him home saying "he's perfectly OK", and "he has promised to do this and that". And himself tells us that's just theatre, he does whatever he needs for people to leave him alone, stop asking uncomfortable questions and send him home where "he can be himself". There's no sign that promising one thing means anything to him. He never showed that he cared about not meeting his promises.
This, in turn, causes that people are asking what do we do at home that makes him be violent and depressed. If outside he's perfect, but at home he's in bed, or violent... The problem is at home. The problem is us. The parents. But no one tells us "you do this wrong, do this other thing instead" they just say "think about it". But we've been years thinking about it, and following advice... And things are getting worse, not better.

He's not as depressed as a year ago, and we are glad for that. But he's not interested in life. He wants to read online until he dies. And when he can't read he gets so anxious that he often hits his brother and his mom if they get close to him. He doesn't say anything other than "can I read yet?" Again and again. And tries to steal somebody else's device, and hide. We try to reason with him and he says "yeah, but can I read yet". For example, yesterday we said we had to talk about why he didn't go to school, he said "I'm going tomorow for sure, are you going to give me the phone already?". At night he said "I'm not going tomorrow, don't try to wake me up or I'll make a scene".

Then, with outsiders, he's a polite young man, articulated, shy, helping even. So we are always told "he has the capacity", but as soon as there are no witnesses, his brain turns to one thought only. Escape reallity into his fictional world of novels. Every second out of that world seems painful to him. If we manage to watch something on TV with him, any pause makes him extremelly impatient: commercials, credits, the song of a tv show, he demands that we skip it fast! and gets angry or even leaves the room if we take some time to do it. It gets scary.

He gets distracted, and avoids thinking about it, while his mind is somewhere else, but we don't. We wake up and we can't sleep again, thinking about this. We keep doing our duty everyday, and assisting the other kid (who demands 48 hours of atention every day), and keeping his appointments, talk with the teachers, the doctors, the social workers... And we encourage him to do a bit more, to keep some of his promises, to risk going outside....
 
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Hello & welcome @AndrewMiller.

Someone here may be able to recommend local services if you state your country.
And you won't lose any anonymity over doing so.

If you are really looking for anonymity, you should use a made-up screen name rather than your real name. (A mod can change it for you this early in the game.)
 
This is so tough to read. You and your wife are really working to resolve everything you have been handed. A program to accept him is a difficult decision to make, and l know you have to balance these life decisions because your family unit is not functional for his brother, so making tough choices means accounting for all family members. Hope you are able to get time with your wife to talk about things and stay connected. And make choices to help with both of your son's futures. Maybe expose the other son to martial arts, or music classes, or sports, etc., so that he has a chance to escape the current family dynamics and find some joy in his life.
 
She was diagnosed with Anorexia, Generalized Anxiety Disorder, PTSD and later, BPD (Borderline personality disorder). While this explained some of her suffering, she always suspected something else would fit better. And she suspected Asperger's, and only recently some profesionals have confirmed her suspicion. She can't work because the kids are very dependent, but she's always busy with their things and taking care of the house.
This cluster of diagnoses sounds not unusual for a woman who is misdiagnosed. Not making a diagnosis myself, but reflecting on my experience with my daughter
 
Girls are not getting support til too late and teenager can be needing help....

I gave few ideas on the below link about dealing with it.....

 

Read this whole thread.....many older women are out there to help and address issues for women....if we keep quiet many more women will struggle through similar fate
 
This cluster of diagnoses sounds not unusual for a woman who is misdiagnosed. Not making a diagnosis myself, but reflecting on my experience with my daughter

My wife was diagnosed with all of those except Anorexia (PTSD, Borderline, GAD), and she was often diagnosed with Bipolar too which is perhaps even the most common diagnosis for women when hospitalized, as it is easiest for them to treat or try to stabilize.

It was not until much later when the ADHD was diagnosed for her after 9 hours of testing through a neuropsychologist, after the doctor performed 30 different tests, after I had to point out to the doctor past no treatments over twenty five years were working and she seemed to satisfy all the criteria of ADHD, that he thought I was on to something.

They overlook conditions which make more sense for women there because of stereotypes women must have some extreme emotional, personality or depressive condition. ADHD and Autism are commonly under diagnosed in them.
 
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welcome to af.png
 
Welcome. I concur with the general guidance that you would want to ensure that you have the right supports and professionals engaged to ensure that everyone gets the support they need and deserve.
 
This is so tough to read. You and your wife are really working to resolve everything you have been handed. A program to accept him is a difficult decision to make, and l know you have to balance these life decisions because your family unit is not functional for his brother, so making tough choices means accounting for all family members. Hope you are able to get time with your wife to talk about things and stay connected. And make choices to help with both of your son's futures. Maybe expose the other son to martial arts, or music classes, or sports, etc., so that he has a chance to escape the current family dynamics and find some joy in his life.
We are in line for a program that would substitute school, he would go there from monday to friday, from 9 to 14h, or something like that. He would be home after that everyday. We heard about another program where he would live there for some weeks.

Even short stays at the hospital are hard on his mother. But with time, we understand at home there's no healing going on. While he's at a hospital he interacts with people, talks at therapy, gets out of bed... In a word, he lives. At home he would stare at the ceiling of fight with us, if he can't just reads online. If he can read online, he's gone. We talk to him and he's not there, he doesn't answer, or gives any signal that he's heard us. He forgets to eat or drink water, he wouldn't go to sleep...
So, our fault or not, at home he's not healing. He needs the challenge of strangers to make the effort to live.

As a stepfather, I don't have any conflict there. My emotional atachment is not bigger that my rational understanding of what might be better for him. My conflict is with myself and with their mom, because even doing my best, and giving them all my time and savings, I can't love them the way she does. They've been difficult from the start, they don't show kindness or respect inside the family, and the kids can't stand each other, so it's very hard to spend time with both of them. And spending time with one, makes the other jealous. I think all parents value some time away from the kids, some breaks. In my case, it's like the only thing I would ask as a holliday, some time of peace.

She and I are not married. We live together because she has no place to go. I love her, and she tells me she loves me. But we have no time to "be a couple". We are 24/7 putting out fires with the kids. Since we live together she hasn't slept with me once (and I'm talking about sleeping, not sex. But I can't remember when was the last time we had sex either), we don't have meals together (anorexic), we don't go out, and watching tv with me is awaste of time for her 9 out of 10 times. 7 days out of 10 she's too angry or depressed to talk to me, and keeps her energy for the kids. I'm always afraid that she's angry with me, I take it personally when I shouldn't. But all in all, I don't feel like I'm the man of her life, or close to it, I don't feel she can make the promises of marriage, and keep them. So we talk a lot, about the kids, and she cries everyday.

She's weary about me going to therapy because she says they would just tell me to run away from them. And I've been told just that by many people, even a priest. No one understands why I don't just leave. Only people in a RS with other BPD people have listened to me and understood, so far. Emotionally I feel drained, I give and give, and I don't like my life at all. But I care about them. But this makes that I don't take criticism very well. It's like "don't I give enough? Doesn't it gets me some slack to make some mistakes? Don't I have the right to get affected by the problems at home?..."

So it's very hard to define our RS, but the kids see me as a father figure. I'm the only father the younger one has known.

I feel it's very bad for us that we are isolated with our disfuctional family. All 4 of us struggle with social interaction. But I feel we need the influence of other people, happy, busy people, to not just influence each other depressions, but to have other examples of what life is. So, S11 is demanding our company all the time, but we also encourage that he makes friends and he has goals in his life outside our family. Kind of what you said. He's in a Basketball team, and by banning the screens at home we succeded in interesting him in other things. He started to write some stories, comics, made a made up board game, sings with me when I play guitar, we go roller-skating... Also, once a week he goes by himself to visit his granma from school. We also have his friends over and he goes to their houses. It takes a lot of effort and insisting and resisting the call of videogames and numbing tv, but we do our best, and it makes a difference with his brother.

Sorry about rambling this much.
 

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