Thinking about Steely, AOG others in their

[totoro]

situations or similar situations.

After reading Steely's post and AOG's post the past couple of days. It got me thinking about kids who have serious mental issues.
Even like Linda's KT is she capable? What will happen to her when she turns 18 if she is not ready? Can WM stay where he is forever?
The kids who are not capable of living on their own.
I do not know if AOGs' difficult child is capable living on his own. Steely's M... I think he still needs lots of time.
Just from talking to her and reading the posts.

I know detach is the thing to say and do. Especially when your kid is doing drugs. Or showing signs that they are possibly capable.

But what do you do when your kid is Mentally unable to live on his own?
What are the options?
I think about a lot of the people in my family. But they did not have help.
My Dad ended up in prison during high school.
My uncle who was mentally ill and had a Learning Disability (LD). Prison and then a halfway house, ended up dying from drugs.
My Mom ... she died
My Half brother never got help, despite being expelled, never used drugs had obvious problem and only now in his 30's is possibly starting to get help.

I lived on my own from my senior year on. Going from house to house, doing things to get by that I would be horrified to see my girls do.
My older brother was on the streets by time he was 16. Luckily my Bio-Dad and I found out and got him, only to have him become a drug addict and dealer...

No-one in my family graduated high school except me. Some of us made it and some did not.


I am just wondering what are the options? What is a parent who actually does want to help to do?
What do you do for long term care? Especially if your *child* can not live at home. Where do they go?
How can we get ready for these things prior to them turning that magical age of 18?
Because like so many of you have found out 18 doesn't mean they are ready to be on their own.
If your child is handicapped in many other ways people expect you to let them live with you past 18. But mentally ill people it seems as if we are pushed to *make* them figure it out and deal with reality. What if they can't?
Because some just can't. We see the people on the streets, homeless or in shelters, prisons or psychiatric units. A lot of these could be our kids, a lot of these people are people who are Mentally Ill and could not make it alone.

What is the next step? What is someone like Steely supposed to do now? What places help us? Where does she go? Is an Institution the only Answer? Are the halfway houses any good? Do they actually work?
They did not for my Uncle.

How do you detach from a severely Mentally Ill child? And should you?
I have no clue as to the answer to any of these questions.
I just get so frustrated when I read these posts and there never seems to be an answer...

Government, Insurance..... it all is part of the problem

 

[Jena]

good morning, or rather good afternoon

Your correct, there are alot of answered questions for many of us, and the future isn't carved in stone in any way, shape or form when it pertains to our children, their struggles, our grief of handling it all.

I am sorry for all your family members with whom were not able to get help for one reason or another, and for those with whom you have lost. Losing family members is always a tragic and horrifying thing. I also lived on my own since senior year. I felt I would be better off living on my own and caring for myself than with my family.

I'm not sure how the story will end for any of our friends kids, especially the ones that you have mentioned, that have got you to thinking about alot of stuff. Rightfully so.

I think the only thing we can do is learn as we go, take it one day at a time. Talk to eachother, and support one another, learn from eachother. As far as preparing our children now for the future, the that's all we can do. I think we all learn so very much from here, and from one another. I understand we all have our doctors, and pyschdoc's and therapists. Yet, one on one first hand experience that we all have is so much more beneficial to me than anything a dr. has said to me in the past 5 years LOL!!!

I do think that there should be more state legislature, more options for our children with whom are coming of age. Yet as with most things in life it grows and changes with time. I have seen alot of kids at the age of 18, with whom do not have mental illness struggles or issues who are still at home simply due to the economy. Its so hard out there now, it's not like when we were younger, we had more options.

I see your frustration though, I have these days as well. When I look at difficult child and wonder will she ever lead a life of forfillment on her own, fall in love, find a career, a family of her own. I think those are the days I just have to have some faith in my ability as a parent, in her individuality as a person and faith in something a bit higher.

thought provoking post, thanks!!

those are just my endless ramblings as usual!! LOL

 

[ML]

Very thought provoking post and I like how Jennifer put it so much. Continue supporting one another, do the best we can to prepare them, trust them and trust something a bit higher.

I belong to a local mom's group and we sometimes talk about starting a group home if it becomes necessary. For instance Manster is a good cook, others are good at laundry, etc. Basically a roommate situation with a house mom or two.

For now I'm going to try and focus on today and practice the stuff Jen talked about.

Hugs,

ML

 

[KTMom91]

I wonder about this as well. Miss KT will be 18 next August, and our insurance will not cover her past 19. Knock on wood, she realizes her medications help her and is good about taking them, but without insurance, her medications cost upward of $400/mo. She doesn't work and play well with others, and getting and keeping a job will be very difficult for her, I'm afraid, especially one with insurance. If she's not on medications, she's a ticking time bomb.

I don't have an answer, either.

 

[Jena]

Has anyone looked into social security at all, which I had for difficult child a bit before I left my job. Yet I didn't have alot of doctor's pertaining to diagnosis so it was a struggle not worth fighting for me.

 

[totoro]

I thought I remembered reading if your child was considered disabled or depending on the diagnosis you could start the process a year or 2 prior to them turning 18 for when they turned 18?
This is if you had not already had them on SSI.
Our therapist before had told us to get the ball rolling when she was 16 or so, because it takes awhile.
We are not able to get it for her right now.
I like the idea of the parent tun group home!

I know some of our kids need to fail before they realize they can do it on their own. But how many times before we realize they just can't, and at what cost?
I am do try to take it one day at a time, these are just thoughts. You know?

We have a long way to go baby!!!

 

[Jena]

t -

I have the same exact thoughts all too often. I often look at easy child and say well she'd survive anything, she's like me. Than I look at difficult child and say wow, what a difference and their both mine!

I get scared, confused, I try not to think of the future as of late. I really don't. I do the best I possibly can to stay focused on the present, it isnt' always easy. My ex husband does not realize what difficult child has, or rather he doesn't want to see it. He's been in denial since the day she was born. He stays and remains in denial. So, I often have no one to talk to about this, until a year ago finding this place.

My family doesnt' get it either. They think difficult child makes a "choice" to be the way she is. My mother is very old school, and doesn't buy any of the diagnosis's. Do you want to know what the topic of conversation was on thanskgiving?? Wanna hear about disturbing family get togethers? My Mom once she had a few glasses of wine in her began talking about holidays past, my aunt, and my aunt's daughter with whom passed away at the age of 2 1/2 suddenly and without any medical problem.

My daughter sat there in total and complete awe, asked tons of questions got upset, said how can that just happen to someone? so, my cousin's dead now?? I just sat there wishing I hadn't argued with anyone about where to go this year, and had just done what we were to do previously and had not taken the long 2 hour ride there. Than we returned to their house for cake and coffee to have them proceed to share stories of when their old house was haunted, strange happenings, etc. and then wait they broke out the dog's ashes. They had a great german shepard for years, he recently passed.

Can you even imagine? Her head was spinning. She wouldn't go to the bathroom at my parents alone, no doubt!!! My mom just rolled her eyes and I said very bluntly well what do you expect after all the ridiculous conversations you have been having infront of her????

So, family hmmm....... friends are where it's at for me personally. men annoy and disappear, kids grow up or in our case grow up and maybe remain home, yet friends are always there.

ok those are just my thoughts. lol

 

[Steely]

Crud toto..........you just posted the same post I was going to. Seriously. This same question has been crippling me all day.

So whatta you do?
How do you determine that our difficult children are mentally competent or capable of living on their own?
And if not what are the options?
What do you do with a kid like M that has a great heart, but can't seem to follow it?
How do you keep the legal system from eating them?
How do you keep your own motherly sanity?
How do you help them be successful?

SSDI is only money - but then what do they do? Sit back and melt into their own sofa cushions because rent is paid for?

I mean if M is kicked out of this Residential Treatment Center (RTC), then I have 3 choices.
Send him to yet another program.........which now that he has been violent, means more of a juvy setting.........
or demand he get a job, grow up, and provide a roof over his head..............
or let him live with me.

Truthfully I don't see any one of those working.
He is too mentally unstable and emotionally immature to provide for himself, get a job, pay rent, etc........
Too lazy to stay with me...........
And too much of a good soul to be in a juvy type setting. He would be so scared that he would run for his life - or just become one.

God I need insight, and help. We all do.
Thanks Toto for posting this.

 

[Jena]

Wow looking at it from where you sit what are the answers, and what defines what a person is capable of doing or not? Who determines it and how?

I never thought of it that way in regards to ssi. Sure, rents' paid yet what about "life", living, job all that stuff. I dont' get it, there are programs for the physically disabled, which is wonderful, there are programs for ppl with whom were incarcerated, what about those with whom are mentally unstable??

I'm going to search the internet. kinda pisses me off if i let my mind go there, and now it's there

 

[SearchingForRainbows]

Totoro,

This is an excellent thread!!! I struggle with these same thoughts day after day after day... I believe husband and I are making the right decision to make difficult child 1 move out when he turns 18 and graduates from high school this Spring.

However, difficult child 2 is a totally different story. Sadly, neither husband nor I nor his doctors believe he is going to be able to live totally independently at 18 yrs of age, and it is uncertain if he ever will be able to take care of himself fully. What are we going to do? I only wish I knew!!!

difficult child 2 needs help with daily living skills, social skills, pragmatic language, and emotional regulation. We have been fighting with our SD for almost two years now and we are no better off than when we first began. We're probably headed to hearing after one final Team Meeting this week.

I've been looking into state services for him. He now has supplemental health insurance through our state. He is eligible for vocational rehabilitation services once he graduates high school. (It looks like he is going to get some help through vocational rehab early - I'll have to write about this another time. We're keeping our fingers crossed!!!) He will also be eligible for SSI.

I know it is going to be very difficult to find him appropriate housing - Either in a group home with staff available, or in an apartment with one or two room mates, with someone checking on him daily? a few times per week? weekly? My head is spinning!!!

I want him to be a productive, happy member of society. I believe he is capable of working given the proper training and help. I can't stress how much I want him to be a productive member of society. I'm very scared of what the future holds. And, I'm also scared because I know, deep inside, he's going to be living with me much longer than I want him to...

I think we should keep this thread going. I know there are lots of us in this frightening position. Totoro, thanks again for posting this. WFEN

 

[mrscatinthehat]

We are there with difficult child 1. We have guardianship first of all. There is no way she is capable of making good decisions at this point on her own.

We are still fighting for SSI. She was under the states guardianship when she was a minor and they dropped the ball big time on getting things done properly.

She is currently living in a group home type setting. I am not sure it works for her. One of these days husband and I are going to be faced with the decision of whether to put her in a more restrictive environment.

We are going through the very things you are worried about.

First don't wait to start the ball rolling. If you think the kids will need help into to the future start the SSI ball now. The income will help with the treatment of the kids. Once they are on it keep up all of the stuff. But now while they have doctors that will help you with all the reports work on it as young as possible. DON'T

 

[mrscatinthehat]

Sorry my post got away from me.

DON'T WAIT TIL THE LAST COUPLE OF YEARS. It can take a long time to get things done. I know your kids are young but keep looking at all of your options.

This is such a battle all of the time for us and difficult child 1. I have no idea where it will end (if it will end). But for now we make all legal decisions. No guardianship is not perfect but I guarentee it is a better option than nothing when for some of our kids it just isn't part of their make up to be able to help themselves.

beth

 

[totoro]

Thanks everyone
I think it is good for us to know what the options are for every type of child. For those of us with different diagnosis's and different aged children.
These things seem to come up on us so quickly. The decisions once made take a long time to be enacted.
And that is if you have even made the right decision!
It seems each State has different options on different levels as well, depending on severity.
The ability to wade through all of the paperwork, not mess it up. It is just mind numbing.
It is good to hear what others are doing and have done.

 

[Jena]

Yes guardianship is another option, why didn't i even go there in my mind. I think this is a great post and maybe one we should try to keep on the front board.

Besides the whole be calm, blah blah blah thing i wrote. It's true and now i see it after taking the time to read through everyone's responses to this as they begin to approach that 18 mark we have to jump on the ball to prepare for the future.

This is a good thread!! thanks

 

[totoro]

Well I go to PE a lot and just read. I don't feel like I have a lot to offer. Some of my own personal experiences maybe. But definitely not with my little girls. Who by the way are perfect... LOL
But just reading through Stars* recent push into adulthood. 3D's just gave her some really good ideas as well as all of the others. These are things that I want to have in my little arsenal when and if. I read a lot of the PE threads and think what would I do. I try to think if those would or could be options here. But they are all possibilities.

 

[SearchingForRainbows]

Totoro,

I think it is great that you found this site while your children are still young. You're way ahead of where I was when my difficult children were small. I know that whatever decisions you make concerning your girls, will be the right ones for your family. You are a a super mom!!!

You brought up an excellent point in the beginning when you asked if detachment is the right thing to do when we have mentally ill children. in my humble opinion, I think no matter how mentally ill our children are, we have to detach to some degree. I think we have to take care of our own needs too. Besides, we won't be around forever, and hopefully, our children will out live us. No matter what their diags are, they're going to need to learn how to survive and be happy in this world.

I have personal experience in this area because I have a mentally ill uncle. My mother's mother spent her entire life taking care of him. He never learned to live on his own. When she died, he was placed in a nursing home. To some extent, my grandmother was the most selfish woman I know. She said more than once that as long as she wasn't around to see what happens to him, she didn't care. Before my grandfather died, he tried to get relatives to live with my uncle - He offered to pay them. No one wanted to do this for all the money in the world!!! My uncle could be a violent and dangerous man (Unfortunately I have first hand experience in this area.)

The point is, my mother's parents never had a life of their own. My grandfather was embarrassed by his son's condition and wanted to hide him from the world and keep it a secret. My grandmother, I don't know if was out of guilt or something else, just "babied" him until the day she died. Her life revolved around whether my uncle was having a good or bad day. She was a bitter, selfish woman. She did absolutely nothing to prepare him for life without her. She didn't care.

I also think that aside from what is right for our children, all of us deserve to have happiness in our lives. We shouldn't have to have our adult mentally ill children living in our homes. This doesn't mean that we shouldn't help them. It just means that we should be able to have a "life" too.

Well, I'm rambling - I'm not sure if I'm making sense or if I'm going off on another tangent altogether... WFEN

 

[totoro]

WFEN I think it fully makes sense! It is getting to this point and knowing when your child or relative is at this point. Or getting the rest of the family to see this.

I try to talk to husband and the rest of the family about these possibilities and that if we have an ongoing plan it would be so much better.
They always treat me like I *want* this to happen.
Like the possibility that K may go to an Residential Treatment Center (RTC) or psychiatric hospital. Do I want it to happen? Heck no, but I am prepared. I don't think anyone else is.
I live on my own as do the rest of my mentally unfit family members! They have needed help most of the way though.
So I just think having a plan, like Star* says. Is so smart and having options would be nice for most of us.
I *know* K will be able to live on on her own and if not, I would like to know what to do...
That is why I love this place.
Your post reminds of something my mother in law would do!

 

[Star*]

Toto,

I wish I had something to add here....but I did get educated about Dude's situation and what we could do and asked and asked and went the gamut of services ONLY to be told time and time again - HE DID NOT WORK IT.

So now at 18 - and JUST starting to "work it" they are trying to kick him out and make him homeless. He can't come home, If he doesn't have an address he's in probation violation and he'll get sent back to jail -and THAT will be for 15 years. Just on probation violation for being homeless. And once he's in prison I'll have no way of reaching him. That is what THIS struggle has been about for years with us. (our family)

Yet even when he GETS it.....they're not playing nice - and yet he still is trying. I'm just amazed at how far he's come in a year. He is in foster care also despite being a FORMER violent so ......

Steely if you read this - try Mentor in your area....and beg for help.

Hugs

 

[SearchingForRainbows]

Totoro,

Sometimes no matter what you do, you can't get the family to see things from a realistic viewpoint. I hope that you won't ever have to make really tough decisions for your girls, but, if that time ever comes, don't let your extended family make things harder on you. For what it's worth, in my humble opinion, you're doing an excellent job raising your daughters. It is so smart to try to have a plan in place, just in case...

If my grandmother was anything like your mother in law, I'm sorry you have to deal with this sort of ignorance, for lack of a better word. I had to detach from my grandmother as soon as difficult child 1 was born - a long story.

I need to spend some time in PE. I hardly ever get over there - not enough time in the day. Anyway, I know I could use some advice from more experienced parents than myself.

I just hate feeling so out of control and scared when it comes to difficult child 2's future. As parents of difficult children, we have to be tdocs, teachers, advocates, etc... without any formal training. It SVCKS!!! WFEN