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Question to step parents with adult step kids

stepmom444's picture

I just wanted to ask those whith adullt step kids with develoopmental disabilites, have any of you successfully brought up the question of when it is a good time to place them in a group home. My ss is 21 and I tried bringing it up really carefully but got shot down by my SO. I also thought I would wiat 5 years to see what happens as hopefully by then his BM will start burning out and will bring it up. When I first met my husband 10 years ago I never raised the issue, but that has really started to become an issue when my ss turned 21 and I am kicking myself for not really talking about it until now. My SO said well you should have known what you were going into. I just don't want my SS parents to keep waiting and waiting years, because I know it's going to tear us apart. I feel powerless. I am hoping my SO will pick up on just how unhappy I am about the future with the three of us joined at the hip. Things have gotten to a point where I have to sit as far as possible from my SS as he is constantly talking to himself really loud. I also avoid talking to him as much as possible to preserve my mental health

Lillywy00's picture

when it is a good time to place them in a group home. 
 

No job, needs more help than most average adults can provide, and 18

Not sure how you're going to do this with your SO not in agreement

notsurehowtodeal's picture

Is your SO still sleeping with his son? Because until that stops, I don't see your SO as ready for his son to move out, let alone they young man himself.

stepmom444's picture

Hi Notsurewhow to deal, 

Yes he is one night a week, down from 2. I have started saying to SS that you're a big boy, you're an adult. Big boys sleep by themselves,

Rumplestiltskin's picture

It sounds like it's the dad who "needs" it. If the man can sleep by himself 6 days a week, he can do it 7. This is your husband keeping this going due to some deep seated need. 

Justdad'swife's picture

I care for her almost solely.  Although we have never and never intend to put her in a home, there is a program that is available in every state called IHSS which is intended to keep people out of institutions.  It's more cost effective for the state as well.  I happen to live in a state where they allow the parents to be the caregiver but not every state allows this.  Either way, they will pay for caregivers to care for him.  I would highly suggest looking into it if you haven't already.  My sd is deaf but she is very loud so I understand what you mean but I do a shhh signal with my finger and she knows to quiet down a bit.  I'm not sure how helpful this is, but feel free to message me if you have any questions. Smile

stepmom444's picture

Thanks Justdad's wife. You're a lot better than me. I cannot do it. Well they do have Life Share here in Canada where caregivers are paid to look after them in their own home, and they also have group residential homes. We are getting older and his parents need to start talking about it at the very least. Thanks for reaching out. I have tried shushing him politely as well but he goes back to talking loudly five minutes later. I do not have the energy to keep on top of him

notarelative's picture

SS is 21. What does he do all day? Is he still in school? Is he participating in some type of work program? What does DH think will happen to SS if something happens to him (and you)?

stepmom444's picture

Hi notarelative,  He goes to his day program 4 days a week, then he is home with either his dad or his mum every other monday. He cannot work. DH is in denial mode. I don't know what else to do but wait for some years to pass 

Winterglow's picture

I have a daughter who has Down Syndrome. She moved into a group home about 6 months ago when she was 20 (she's now 21) and she absolutely loves it! Why does youir SO persist in wanting to keep him joined at the hip? What kind of a life would that be for his son? Stuck with parents all the time? No independence, no friends, no activities... What a sad existence that would be.

My daughter is thriving in her new home - she has friends, there are lots of things for her to do, plenty of activities are organized and she is getting a slight taste of the working world. We still her for holidays and once a week when we take her to her speech therapy. I am very happy for her and feel that we have all been very fortunate to have found this place.

My advice is to do a bit of research, find out what is available in your area and then present it to your SO as a list of positive things these places can do for your SS and a list of reasons why him being stuck at home with you is absolutely not good for his development. 

If all else fails, ask him what will happen to his son when you two are no longer there and don't accept the answer "oh, somebody in the family will surely take him in" because that is not fair on the rest of the family nor is it necessarily true. FWIW, my daughter also has a twin sister, a standard model, and the last thing I want is for her to feel that she is her sister's keeper. She has her own life to live.  Her sister is our responsibility and always will be.

stepmom444's picture

Thank you Winterglow, your answer has given me a lot of hope. You're right, I would never expect my SS's younger sister to step up. They both desersve full lives 

Winterglow's picture

Thank you.

I cannot imagine wanting to deprive my daughter of living her life. She deserves to live life to the full. Ask your husband why he wants to deprive his son of living his best life. Seems so cruel and unloving to me.

You're on the right track for you AND for your SS.

Winterglow's picture

Where I live, the recommended age for starting in a group home is 18. However, due to the general scarcity of places, it's highly recommended to start looking two to three years before that. Yes, there are not nearly enough places. 

Frankly, I think youre husband is in dire need of counselling to come to terms with why he thinks it's a good idea to hide his son away from the rest of the world. THe kid's lack of progress might even be partially due to his father's treatment. Has he ever attended school? If so, how did that go?

stepmom444's picture

Thanks WInterglow. Sorry I have not responded earlier. How did you transition your daughter? Did she accept it? Did you start mentioning it earlier in her lilfe? Also I have to remember there are two sides of this dilemna, his mum who may not accept him going into a home as well. 

Winterglow's picture

Well, she was in a day centre before that and she had outgrown it and was in desperate need of new challenges.

There are only two group homes within reasonable distance and, though neither had a full time place for her, they did have short term day vacancies when they had residents on holiday, so she got to test both places several times. Then we moved on to the full board options and she loved it.

Meanwhile, she was still going to her day centre in between her short stays and hating it more and more.

When she was offered a place she was thrilled! The decision was easy to make at that point. 

Winterglow's picture

She has a great social life, something she wouldn't have if she were stuck with us. She goes shopping regularly, has dance classes, goes swimming every week, has formed a small group of friends, is getting a little work experience, and that's just for starters! 

Her group attends pretty much every local event at the weekends available, if there's nothing special on they sometimes go to the movies or the theatre, and there's something organised by the management for all important dates (music day on 21st June was epic last year!).

I can't imagine depriving her of all that...

stepmom444's picture

Thanks Winterglow. It sounds really great, and lots of activity for her and having friends. SS has zero friends on the weekend, but he has friends at his day program 4 days a week. 

Rags's picture

What an amazing mom you are to both of your DDs.

They both are truly blessed to have you as their mom.  I have no doubt your special needs DD is living a wonderful life.  

Give rose

GhostWhoCooksDinner's picture

Your daughter sounds like she's living her best life! I'm happy for her. (You're a great mom!) Smile
 

Harry's picture

You DID NOT know what you were getting into. All of us feel it's going to be normal. But as see here it's never is. You did your part.. he's21. Things are not going to change.  You have to change.  You have to put your foot down and say either SS goes or they both go.   I would not have my SO sleep with his kid instead of me.  You must realize there something not right with DH. 
'Once again nothing magically is going to happen here. It sucks for him.. But you are at crossroad.  Either you spend the rest of your life taking care of this kid.  Or you put him in a group home and live your life.  As in going on Adul7 vacations, cruise,  Have friends with out SS involved,  I bed you don't get invited out to dinner with friends because of SS. 

'The faster SS is out the better it is as in "This is the first day, in the rest of your life"

stepmom444's picture

Thanks Harry, I will keep hinting at retirement plans (I have started) Thank you so much for your perspective 

Rags's picture

21, even if special needs, is entirely inappropriate to cosleep.

Coddling, even if special needs, is never in the best interest of an adult aged child.  Or any aged child for that matter.  This young man needs a group home where he can have a life and engage with others in similar life situations.

In my first career when I ran my own company I employed multiple special needs adults group home residents in back of the house roles. They were reliable, engaging, and an important part of the team.  A few even progressed to front of the house positions where they interfaced with my customers.  More than one of them would check in when they came to work and tell me that they were going to kill me.  Not a menacing comment, just on par with their mental capabilities. Not one of them ever said that to any other of my team or to my customers.  I was the one that was greated with the "kill  you" statement.

Some of my special needs employees were middle aged and their parents were deceased. They did have siblings that were part of their  support but they did not live with those sibs. The group home was a wonderful place for these adults to be adults within their ability to function as adults, they had friendships, their own efficiency "apartments", and structured activities with professional care giver oversight.  

Many parents of special needs adults forego that opportunity for their adult children, sacrifice their own peace of mind and lifes for their special needs adults, and interfere in the lives that their special needs adult children could have.

Of course not every special needs adult is capable of functioning at that level, though IMHO even those people should have the opportunity to engage in an appropriate residential community and have as quality of a life as possible.

Your SO and BM are not doing their son any favors IMHO. 

Your SO is failing you by expecting you go join him in ruining his kids potential and denying his son, himeslf, and you your best lives. 

If he can't pull his head out, you need to move on.

IMHO.

Take care of you.

stepmom444's picture

Thank you Rags, this is going to be a slow process but I will start talking about my retirement plans with SO and what I would to do (vacation etc) Thank you for your answer

Harry's picture

Man who is still sleeping with his son.  Like WHY ..  How screw up is DH .  How do you allow this insanity to go on ?? 
'I admitt I am screwed up also. But never that screw up.  You don't go on adult vacations ? By yourself.?

Rumplestiltskin's picture

I would maybe start by bringing up the fact that parents rarely outlive their kids. That the time will come when you both are gone and SS might be at the mercy of people who don't care about him. And that the sooner SS finds a place where he is happy and well cared for, the better. He will adjust better the younger he is. Also, you and your DH are still well enough to look after him and make sure it's a good fit. If it happens when you guys are gone, SS will be at the mercy of who knows who. DH seems like a "rescuer" personality and likely codependent if he still sleeps with an adult man. DH needs to feel like, by taking action now, he is, in fact, "rescuing" SS from an uncertain future. 

Rags's picture

Though we did not know it when he was a minor, SS-31 is ADHD.  We raised him with very rigourous standards of behavior and performance.  After graduating from HS at 17 and with honors, though it was a periodically arduous battle, we worked his tale bone off as our live in chore boy until he figured out that working his butt off for nothign more than a roof over his head and food was not what he wanted and enlisted in the USAF.

He is approaching his 13th service anniversary (I have been saying 14th anniversary but... I took a year of credit not yet earned).

He is fully capable of supporting himself so we do not have anywhere near the challenges that you and many others have.

One of my childhood BFFs was Dx'd with schizophrenia in his mid to late 20s.  His parents did have him institutionalized a few times over the years and have had him made a ward of the State.   He lives in a garage apartment in his parent's home and has for decades.  

His parents are elderly and have their estate set up to go into trust for his support upon their demise.  It is administered by a bank that their family founded.  His younger brother is not capable of protecting his best interests and would gut the trust if made the executor.

I have another very good friend whose special needs adult son could not live on his own.  He remained with the family.

When I was running my own company I employed a number of residents of various group homes in back of the house jobs.  They were great. Quirky, reliable, etc....   They lived wonderful lives in their private lives in their group home.  Close friends, community, a level of independence, great care, etc.....

I hope that your DH and BM can get their heads engaged and do what is best for their kid.  Though the cosleeping with his adult son daddy is not likely to engage his head effectively.

Good luck and take care of you.

GhostWhoCooksDinner's picture

I've been working in the developmental disabilities field for 25 years and my advice is this.

I've seen FAR too many families keep their disabled adult children at home for as long as possible. While I understand, what ends up happening more often than not, is there comes a time when the parents can no longer care for the adult child, other family members are in no position to take him/her in, and the diasbled adult ends up in state custody after the parents experience severe helth problems of their own or die. Typically, that means they're placed in a bed in a hospital or nursing home for months on end until a bed in a group residence becomes available. Even then, it may not be the most appropriate setting for that individual, it may be far from other family, etc. Meanwhile, the adult child is not only grieving the loss of his/her parents, but also having to adjust to a new home, usually enduring several temporary settings in the meantime.

I implore parents and other family members to get their children into appropraite residential settings early on, whether that's a group home, supported living situation, whatever they need to be happy and successful. That way:

a) the parents have say as to where their child lives and 

b) the child can get used to the new home, let it become home, bond with peers and staff, while still being a part of their parents' lives. When the parents inevitably, eventually pass, it will make the transition SO much easier.

Plus, a lot of adults with disabilities thrive in an approipriate residential setting. They make friends and enjoy social activities with peers who are on their level. They go out in the commuity and learn skills they need. It's great that he's attending a day program four days a week; that's an excellent start.

I've worked with many, many people who thrived and developed great self-confidence after leaving home for their own living situation. Even if it's a group home, they consider it "their home" (because it is) and makes them feel more independent. Please, please consider the future! It can take any number of years on a waitlist in some states/areas, so keep that in mind.

 

Rags's picture

Though not a special needs child, when my granddad passed we tried to keep my GM in her home.  She had been suffereing from dementia for several years before granddad passed   

After a year we chose to move her near the rest of the family and found a residential home for her. It was nice, very peaceful, and entirely inappropriate for my GM. She has spent many years mostly sedentary since they retired.  The first residential home replicated her life.

That facility closed due to a labor dispute. We found an age in place facility that was much larger, well staffed, and was like a cruise ship in a nice setting.  It was controlled entrance and exit to keep wanderers from getting lost.   GM had her own apartment (no functional kithen). Very nice but modest.  Within a few short weeks my GM blossomed.  For the last years of her life she was engaged in her life, with people. She thrived.  She passed at 84 far happier than any of us had ever seen her.  Except for my dad.  He remembers his mom as an energetic young woman living an energetic life.  His last memories of her are of an energetic woman living her life to the fullest.  Her GGKs all remember her as a loving, dancing, serial winner of "Miss Congeniality" at the annual talent contest.  

Not a special needs child or kidult, but a profound tale of the incredible outcome of the right "group home" with the right staff allowing residents to live their best life.

Winterglow's picture

I could not agree more.I wish more parents understood that keeping their kids at home is pure selfishness and NOT concern for their child's wellbeing. 

ESMOD's picture

My dad had a friend who had an adult son.. who never really was diagnosed.. parents never really sought treatment but he was incapable of keeping any jobs.. and had definite issues interacting socially.. basically.. all he did was live with mom.. and he was in his 40's..  She was a widow of some years.. maybe at some point she figured her son would be a good companion?

But.. she ended up having end stage breast cancer.. and the doctors said no treatment would extend or help.. so there she was in a panic and ill at the end of her life with a "man" that had never lived on his own.. never had to take care of himself... and with no prior contact with any resources.. no help.

She panic moved all the way across the country to be in a state closer to one of her daughters.. who I guess she hoped would take on her son.. but that took all her resources.. and didn't really give the guy any good resources.

My dad never really heard what ended up happening because she did pass.. and he is unsure whether her other kids stepped up.. or washed their hands of their brother.. that my understanding was.. they resented for all the coddling they thought he got.

Winterglow's picture

That is so incredibly sad. My mother told me about a boy that used to wave at her and her friends on their way to and from school. She realised much later that he was special needs. When my daughter was born she realised how much that poor boy missed out on life.

We need to be more aware of our children's needs and stop thinking that we are the solution. It's an ongoing situation. The solution is seldom to keep them at home.