Please don't feel bad about the way you feel.

What are the plans for your SD's future? I am assuming there's a big age difference between you and your husband. Is he counting on you taking care of her when he's gone? Please excuse me if I'm wrong.

I hope he's considering a group home  for her because the current situation is as much fun for her as it is for you ... i.e. none at all. Does she enjoy her days of respite?  And why do I get the impression that you're her caretaker? Where is her mother? What about the rest of the family? Why,do you feel you're stuck because you bought a home together?

Please understand that this is not an attack, I'm just trying to understand.

One of my Jr HS BFFs was involved in a motorcycle accident and suffered a TBI.  While he was in the hospital in house rehab he pestered and worked with the hospital to set up a group trip to a concert for the younger TBI patients doing rehab in that wing of the hospital.  We were heavy into Metal bands together in Jr HS.  He was wheelchair bound due to mobility issues from the TBI.  The staff moved the concert goers to the loading dock where a bus was picking them up. My friend was parked at the edge of the loading dock. The attendant forgot to lock the brakes on his wheelchair, and he rolled off of the dock backwards falling at least 8ft onto the back of his head severely amplifying his TBI.  His parents had sued the company that owned the oilfield service truck that had run him over on his motorcycle and won a very large settlement for him.   They then sued the hospital and won an even larger settlement after the loading dock incident.  Both settlements totaled well into the 8 figures.  I visited him a few times while he was in hospital rehab and stayed in touch with him and his parents for a number of years following the accidents.

They ended up buying a Baskin-Robins franchise where he worked for many years.   He eventually was able to walk and serve his customers from behind the counter of the ice-cream shop, work the registers, etc...  All of the settlement money went into trust for his medical care and support.  He was a later in life whups baby for his parents.  His sister was nearly 20yrs older than him.

An interesting element of his TBI was that in Jr. HS (8th & 9th grade) he and his parents smoked like chimneys.  When I visited him in the hospital he and I were talking and I asked him how he was doing not being able to smoke in the hospital.  He laughed and said that he had no memory of ever smoking and the thought of it nauseated him. I was not the first visitor to ask him about smoking.  He was very proudly a non smoker when he came out of his very long coma after the first TBI.

After he was out of rehab and working in his B&R store, he would regularly attend Heavy Metal concerts at the large arenas in the city.  He would be taken to the arena in a limo, sit in box seats, have escorted backstage passes to meet the bands after the concerts, etc...   He was in a wheelchair for anything but very short periods of mobility. Though his TBIs were caused by incidents of tragic negligence by two different major companies, he did enjoy his life as much as he could.
 

Last edited by Rags (10/08/2025 12:38 am)

Winterglow wrote:

Rags wrote:

I am sorry you are struggling.  It is a situation that has to be extremely difficult and not one that I have any family experience with.

That said, whether she can help it or not, you and your little ones have a right to a life that is not consumed by your DH's prior family special needs adult child.  

With the twice monthly respite care I assume that SD-28 is fully registered for social support with the appropriate organizations.  I suggest that you start making it clear to your DH that the home is yours as much as it is his and that it is long past time for him to engage full quality of life options for his special needs DD and get her into a SN adult group home where she can have as full a life as possible and you and your little ones can have consistent normalcy rather than the constant tension and drama.

This is not cruel; it is not manipulative. It is kind.  That your DH hasn't done this already is a paramount unkindness that he is perpetrating against his own SN adult daughter. She is knocking on the door to being 30yo.  He is doing her no favors.  Not only is this adult woman being victimized by her father and the rest of the family, your little ones are being sacrificed to their SN adult elder sister.  No judgement intended.

This is wrong from just about any viewpoint.

IMHO of course

While I do not have personal family experience with any similar situation to what you are dealing with, I have had experience employing SN adults who lived in SN adult group homes.  They were happy wonderful people who lived full lives within their community.  They had special event visits with their families at the homes of their families, and their families would visit and attend special events are the group homes. I was regularly invited to events at the group homes of my SN employees.  What amazing people. amazing places, and amazing events those were.  SN adults engaged with each other, wonderful support staff. truly magical situations.  No doubt there is drama as there is in any life, but those SN adults were living rather than being warehoused in their family homes. 

IMHO, as difficult as it is for parents to let go and step back from caring for and providing for any child reaching or progressing through adulthood, the parent's duty to maximize the quality of life and expand the life experiences of their SN adult children has to trump the parent's feelings, guilt, and smothering of their SN kidult.

Your DH also owes you and your joint little ones a calm and peaceful home and life just as he owes his SN adult DD as indepedent and full a life as possible.

Take care of you. Take care of your little ones.

I just want to add that keeping a SN person at home long after that person has become an adult with no intention of letting them spread their wings is a deeply selfish thing to do. Often the parent(s) thinks they are doing the right thing by keeping them close but they aren't. They are often making themselves feel better but they are doing their child no favours. Ask your husband why he's keeping her tied to you rather than finding a group home where she can thrive (the older she is when she starts a new life, the harder it will be for her). If he says it's because he's not ready yet, he'll him that he's being selfish, very selfish.

FWIW, I have a daughter who has Down Syndrome, she's 23. She's been in a group home since she was 20. Every week, she spends Thursday night with us because she has speech therapy on Friday morning in out town. She has blossomed since she's been there. At this very moment, she's on a trip with a few others from the home to Disneyland Resort and couldn't be happier.

Don't let your husband wriggle out of his responsibilities by letting his daughter just sit at home. Life could be so much better for ALL of you.

Winterglow ^^^^^

Your DD is so blessed to have a great mom.

Sorry so many typos from my fat thumbs...hopefully people can piece it all together and make sense of it.

^^Agree with notarelative. Dad needs to look into that immediately.

As for the in-laws... are they helping? Are they willing to help? Will they commit to a few hours one day a week to take SD to activities or fo activities with her? Let her have quality grandparent time and sleep over? If not, they need to hush. 

Winterglow wrote:

notarelative wrote:

Dad is saying move out at 30. Has he investigated potential living situations or the waiting list length? If not, he needs to do this now. An appropriate place does nor magically appear when you decide the time is right (at least not here).

I very much agree with this. It isn't easy finding a place that is right for you to start with and get on their waiting list. It can take years to reach the top of the list.

I wonder if the ILS don't equate a group home with a nursing home for old people or whether they imagine a group home is just a new name for a Victorian era institution?

In any case, I suggest that you start looking, and when you find the right place, you make him visit it and put his daughter's name down. If he won't, lay into him about being too selfish to see what his daughter wants and needs and to stop thinking of himself for once.

I concur.  Your advice is driven by love and experience.  I have seen how a great supportive home and environment can light up the world of the SN adult incredibly.  Even for SN kids.  I worked several summers as a Jr counselor for SN students at a summer camp.  Our neighbor and good freind of the family was the director of SN education for the school district where we lived.  His son and my younger brother were the same age and BFFs as little boys.  When the summer camp started he would take his son and my little brother with him.  I went along to keep an eye on the boys (I'm 6yrs older).  That evolved very quickly into me be put in the activity rotation as a Jr Counselor to help the HS and college aged counselors who were paid.  My pay was the great time and activities.

One of my closest childhood friends is the director of the Arc of St Johns providing services, etc for I/DD adults.  She started working with on the spectrum kids in HS and has served the community her entire adult and professional  life.  The joy those wonderful people experience is beyond inspiring when they have access to the support, facilities, and incredible dedicated professionals and caring people who get involved.   I also was able to participate in a small way when I employed a number of I/DD adults.  The community embraced me and my business.  I was invited to attend holiday events, etc... regularly.  An amazing time in my life for sure.
 

Last edited by Rags (11/11/2025 3:26 am)

Winterglow wrote:

Rags wrote:

I am sorry you are struggling.  It is a situation that has to be extremely difficult and not one that I have any family experience with.

That said, whether she can help it or not, you and your little ones have a right to a life that is not consumed by your DH's prior family special needs adult child.  

With the twice monthly respite care I assume that SD-28 is fully registered for social support with the appropriate organizations.  I suggest that you start making it clear to your DH that the home is yours as much as it is his and that it is long past time for him to engage full quality of life options for his special needs DD and get her into a SN adult group home where she can have as full a life as possible and you and your little ones can have consistent normalcy rather than the constant tension and drama.

This is not cruel; it is not manipulative. It is kind.  That your DH hasn't done this already is a paramount unkindness that he is perpetrating against his own SN adult daughter. She is knocking on the door to being 30yo.  He is doing her no favors.  Not only is this adult woman being victimized by her father and the rest of the family, your little ones are being sacrificed to their SN adult elder sister.  No judgement intended.

This is wrong from just about any viewpoint.

IMHO of course

While I do not have personal family experience with any similar situation to what you are dealing with, I have had experience employing SN adults who lived in SN adult group homes.  They were happy wonderful people who lived full lives within their community.  They had special event visits with their families at the homes of their families, and their families would visit and attend special events are the group homes. I was regularly invited to events at the group homes of my SN employees.  What amazing people. amazing places, and amazing events those were.  SN adults engaged with each other, wonderful support staff. truly magical situations.  No doubt there is drama as there is in any life, but those SN adults were living rather than being warehoused in their family homes. 

IMHO, as difficult as it is for parents to let go and step back from caring for and providing for any child reaching or progressing through adulthood, the parent's duty to maximize the quality of life and expand the life experiences of their SN adult children has to trump the parent's feelings, guilt, and smothering of their SN kidult.

Your DH also owes you and your joint little ones a calm and peaceful home and life just as he owes his SN adult DD as indepedent and full a life as possible.

Take care of you. Take care of your little ones.

I just want to add that keeping a SN person at home long after that person has become an adult with no intention of letting them spread their wings is a deeply selfish thing to do. Often the parent(s) thinks they are doing the right thing by keeping them close but they aren't. They are often making themselves feel better but they are doing their child no favours. Ask your husband why he's keeping her tied to you rather than finding a group home where she can thrive (the older she is when she starts a new life, the harder it will be for her). If he says it's because he's not ready yet, he'll him that he's being selfish, very selfish.

FWIW, I have a daughter who has Down Syndrome, she's 23. She's been in a group home since she was 20. Every week, she spends Thursday night with us because she has speech therapy on Friday morning in out town. She has blossomed since she's been there. At this very moment, she's on a trip with a few others from the home to Disneyland Resort and couldn't be happier.

Don't let your husband wriggle out of his responsibilities by letting his daughter just sit at home. Life could be so much better for ALL of you.