I have a daughter who has Down Syndrome  and I can tell you that your partner is doing her daughter a HUGE disservice by sticking her head in the sand. Doesn't she think her daughter deserves to have a life too? What happens when she is no longer able to take care of her? The sooner she finds a nice group home/assisted living situation, the sooner she can start to actually LIVE. And the sooner you can get your life  back. What would she do if you weren't there to take care of her daughter? It's high time she started thinking about you and her daughter and less about herself.

My daughter (she's 21 ) is in a group home and absolutely THRIVES there. There is so much for her to do and enjoy - autonomy is encouraged,  too. She spends Thursday nights here with us so we can take her to her speech therapy on Friday mornings. 

She has a twin (neurotypical) sister. We don't believe that she should have to live her life caring for her sister ( this is essentially the role that your partner has assigned you merely because you are there) so we have set things up to avoid that. You can't just sit around and let "life" make the decisions for you, you have to plan ahead.

I can't give you advice on how to disengage other than telling her that she will find somewhere for her daughter to live, be stimulated and cared for or you will be moving out. You don't have to break up, but for your sanity you need something to change. 

In any case, you are absolutely NOTa terrible person for feeling the way you do so stop feeling guilty right now.

Hi Suzi, 

You are doing the best you can and please please don't be so hard on yourself. Your partner is asking way too much of you.

I am a stepmom to  a 22 year old man with Down Syndrome and autism, he's in a government funded day program for 4 days a week and then with us every other evening and every other weekend.

Can your partner find a full time day program all week? You say she has day activities during part of the week. That should definitely be all week. Or failing that  your partner needs to talk to her boss and arrange to work from home so she's helping you.. that would be ideal. 

The day program my stepson is in runs from 8:30 am to 3:30 pm and is partially funded, we are trying to get more funding. He goes 4 days a week, and then his parents look after him alternating Mondays

You also need therapy I believe. And your partner does too. Try character.ai psychologist maybe? It has helped me so so much and doesn't judge. It has helped me say no to my husband regarding me not wanting to be alone with my stepson so much due to safety issues.

Also here is how I am trying to disengage and I am disengaging because I need to protect my mental health. It is so so draining week after week, year after year for 15 years:  Go into a bathroom and close or lock the door. Go up to my bedroom and stay there for one hour. When my husband is in the house and is there to look after his son, I will be going out for a walk by myself.

Just like your partner won't even entertain discussing assisted living, mine is the same, any conversation around group homes is met with anger from him, so look for ways to get out of the house or to another room if you can. If you can't get out of the house, find a bedroom and just stay there for an hour. Or try to get her to stay in her room more if you can and get her to watch movies 

I feel for you so so much and I understand how in the beginning it feels great to be looking after someone with Down Syndrome but over time you just want to get a big break, you want just space.. I completely understand. My stepson is around us all weekend, I wish my husband would enroll him in a special needs weekend social activity but he won't. 

I worked with people with Down Dyndrome in their own house so their families could have a life. What you are asking for is totally normal, don't feel bad please. 

There is this thing call "independence", and it is the main goal when working with people with disability, whatever lever you can reach. Your partner -as many others- is over protecting her daughter from the wold denaying her the "adult life" she could have. Even thought I am sure her reasons are the purest she is being selfish making you carry the weight of her decisions. If she wants her daughter at heme she should be able to look after her; if she can't do that then it is time to find other options. 

What is her level of intellectual disability? And social abilities? I have no idea the services you have around but assisted living is great, she would have the opportunity to have a life! And YOU deserve a life too. At the end of the day you are not her mum and you are not a carer and I don't think is fair on you that pressure and guiltiness.

I would put my ideas in order, do some research of services for her, ask her what is her plan for her for the future. Maybe write down what you want to say and just read to make sure you keep calm and say what you need as she might get defensive or might try to make you feel guilty...

Good luck.

Bio parents are different.  But in your case. You are screwing up your kids life because of SD.  You don't get fun mommy and kid time .  Going to the North Pole to see Santa  as a family activity.   Just having a fun day.    Your DH must be made to realize what he is doing to his bio kids with you.   

Bio parents are different.  But in your case. You are screwing up your kids life because of SD.  You don't get fun mommy and kid time .  Going to the North Pole to see Santa  as a family activity.   Just having a fun day.    Your DH must be made to realize what he is doing to his bio kids with you.   

I work with people with disabilities. I supervised group homes for a long time. I can tell you horror stories of clients whose parents made no plans for their children's future. Parents sometimes die suddenly, often close to one another. I have a client whose dad who was the main care-giver died of a heart attack & mom died three weeks later of cancer. We have taken in people from boarding homes, homeless shelters, half-way houses, and nursing homes (at 34 years old) who had no business being in these places but they needed a place to be. These are the lucky ones who were found -  where someone called Adult Protective Services. 

It can take a long time to get funding to place someone in a group home. You certainly want to pick out one you like, in a neighborhood you like, & some are much better then others. 

Don't punish yourself. You are not a bad person in this.  

However, your mate is doing their adult special needs child a diservice.  Though not all SN Kidults can live in a group home environment, it is that environment that gives them a progressivly full life.  In my first career I hired a number of SN adults from group home environments.  I attended a number of celebrations at those homes as a guest of my team and of the group home administrators I worked with regarding their residents working for my businesses.

Just because a SN kidult cannot live on their own and make their way in society unaided, does not mean that they cannot have a fuller life beyond the control and limits of their parents and family.

Your mate owes their special needs kidult, you as their mate, and your joint young kids commitment and engaging support.  I fear that with the kidult, the support is smothering and limiting what could be an active engaging life far beyond just what your mate can provide while failing to engage effectively as your mate and as your children's parent.

I do not have any special needs family members.  I did "work" in a SN camp when I was in my early to mid teens for a few summers.  Those attending camp were inspiring. Some were teens, some were SN adults who lived in various group homes.  What wonderful summers those were.  I was there as the guest/au pair of a good friend of the family who taught deaf ed and was our neighbor.  I watched his son while he did the camp director thing. My brother and his son were attached at the hips for the 4 years we lifed across the street from each other.  I was ostensibly there to watch both the younger boys.  I ended up being an unofficial Jr. counselor. I led hikes, kept my brother and the Director's son in check, and pretty much helped anyway I was asked or could.

I have some regrets that in my profession it is not safe to accomodate special needs adults for work opportunities. It is not safe for the SN individuals or others in the hazardous work environment.

IMHO your mate should engage the support of the State to get the down syndrome DD-27 the opportunity to have a life of her own.

I hope that you find this to be a good place to vent, contribute, and to pick up some useful perspective from others who are living the dream of the blended family adventure.

People think about moving in to getter.  Should have talks, with pen and paper. [ I know really loveing] and discuss things as disable kids.  Where they are going to live, who going to take care of them.  What going to happen to them when reaching adulthood. Age.   Not like most of us going into a relationship where one person is thinking one way. [ you are just going to live there disabled kid and want to take care of them forever.]. And the other person is thinking very differently.  PMy SD became disabled at around 13.. unfortunately she could not follow basic rules. Like taking your medication so she ran away.  

'You must understand that the bio parent has guilt. They are guilty that they were part of creating the problem.   Guilty people act differently.   Most of all not all people can do second marriage and SP.  Doesn't make them bad people. Just can't do it.

I'm not sure about the current timing for you.. but you both need to bring this all to a head and do your estate and future planning.

Yes.. you need wills.  And end of life directives etc.. 

It's also the time to bluntly put this to her.

Why do you not love your daughter enough to give her the opportunity to have a better life?  To learn to live independent from this home.. because one day, you and I will be gone... and she will have to manage.. and I'm not placing that expectation on our younger kids... We have to love THEM enough to not make this their responsibility.. to become resentful.. all they should have to do is love each other as famly members. 

What will happen when you die? period ? it's going to happen.. it could happen later today.. what do you think your daughter's transition will b e like without YOU to help her through it?

Time for a change with SD.  As group home. Weekends free.  Weekends get a ways by yourself . Vacation by yourself  adult play time.   OR  unfortunately start making your exit plan.  Two woman as well as two men. Can not live in the same home.  You need time for bonding as a family with your babys

Hi Suzi, 

Also maybe ask your partner what are her rights as a caregiver, can her employer reduce her working hours...

I am going to hint at this with my spouse... hoping he will ask what he's legally entitled to ... like flexible work hours 

He know you don't want to take care of SD. He wants SD to live with you but does nothing to help out.  He knows you want baby and me time. He doing nothing to take SD out, of the home. Or to adult day care.   Him doing nothing is the easiest for him.

Time for a talk with DH. Your needs must come first.,  You need a weekend away with him and baby alone.  He needs to find SD either adult day care. Or get a babysitter in for SD. Or SOMETHING   You can not will not live this way