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Feeling so stuck and unsure

Iamfine_noreally8's picture

First time posting here... sorry for the lengthy post, but I'm seriously wondering if I am the worst asshole ever. My BF and I have been together for 6-7 years and have somewhat of a tumultuous history. When we first got together, I moved into his home with his mom and autistic son (at the time he was 7ish). She was helping to care for son since my BF is a single dad. I really struggled with that situation and am wondering if I have some social anxiety because I was HIGH anxiety everyday with so many people around - going from living alone to that situation. So I decided to leave and move into my own place again. After Covid happened, we got back together and ended up having a daughter. We decided to move into a new home to start fresh, but still along with gramma and son. That was also a disaster as it did not change the whole dynamic or feelings I had before. Fast forward, gramma is out living her best life, but now I am feeling the burden and stress of caring for SS (we are not married). He is now a teenager and has some other behavioral issues (ADHD, Tourette's). I am feeling like an asshole because all the past decisions and events... did I bring this on myself? Now we have a daughter and I'm worried about how she is growing up, seeing/feeling the stress and anxiety that I have surrounding SS. I know my BF feels all of this too and he tries to overcompensate by walking on eggshells surrounding the issue. I don't want this. I don't want all the rage, anxiety, guilt... this is a situation where SS could be living with us forever as I don't see my BF handing him off to anyone (and I would never suggest that). The BM is in the picture, but very little and has a lot of health problems. What happens when she passes away? I wish I had the compassion to accept the situation and be "all in," but the thoughts of a forever caring for SS when I have the option not to... it just scares the shit out of me and I don't want it. I feel so sad about it all. If we did not have a daughter together, I most definitely would not still be in the picture. Some times are better than others, but overall these feelings keep boiling over. Thank you for reading - any thoughts/comments welcome. Please be kind as I have already said/felt the worst things about myself. 

Iamfine_noreally8's picture

To add more, SS acts so different when my BF is out of the house. I am mostly focused on my daughter, but I make sure SS has what he needs. He goes through these super loud screaming/laughing fits, which may be the Tourette's. He does not understand how to flush his poop down the toilet so I am constantly finding in the toilet. He will get really upset if I'm simply asking him not to do something and try to explain why... mostly I am so happy when he is not around. Anxiety, stress, rage the moment he is home. I understand a lot of these emotions are surrounded by the situation, not solely SS. At any rate. It sucks big time. 

Winterglow's picture

Does your SS go to school? Does he see any carers  or professionals for his special needs? Does he have any friends? How old is he now? How does your bf envisage his future?

Iamfine_noreally8's picture

He does go to public school in the special needs program and is now 14. No other special programs or friends from school. His best friend is his gramma who lives about 2 hours from us now. My BF is also unsure. We have talked about it and he states his priority is to take the burden off of me somehow, but in that scenario I also feel terrible. I do want what is best for SS, you know? I don't want to compromise his development or happiness for what feels like my selfish needs. At the end of the day it is my BF decision, but I don't know. Our relationship has been strained for a long time.

notsurehowtodeal's picture

Do you work outside the home, or are you the primary caretaker for both children? What therapy and schooling does you SS attend? If you are the primary caretaker, that needs to stop. The child needs to go to school or some sort of care facility at least part of the time.

Iamfine_noreally8's picture

We both work and I am finishing up some schooling. When SS is with us, I would say it is split caretaking. He goes to public school in the special ed program. No other activities or therapies. 

JRI's picture

This boy is always going to be a problem.  I dont see him going anywhere, he will always be there.   I'd cut my losses and leave.  I'm sorry. Its a tough situation.

Survivingstephell's picture

Why no other programs at 14?  There are group homes for adults.  Jobs.  Why no expectations on functioning to his full potential?  How is he going to get there?   You should feel no guilt over your feelings.  What would DH do if you were gone?  He'd HAVE TO FIGURE IT.  His lack of ambition towards parenting his son doesn't bode well for parenting your little one.  

There are other people on this board who have faced this challenge and I hope they chime in with sound advice for you.  

stepmom444's picture

It is really is okay to feel how you are feeling. I am so sorry for you. Try putting some physical distance between you and your SS. You sound like you are alone with him quite a bit. Just don't interact with him as much to give yourself some space. Sounds harsh..but he is causing you so much's not sustainable. His dad needs to take care of his toileting, including flushing poop. Just leave the poop for his dad when he comes home. You don't have to do that.  My husband does all my SS's toileting. I do however use a remote control bidet and stand outside a closed door if SS is on the toilet. Try getting out of your house for an hour here, an hour there or asking your BF if his son can go in his room a bit more often for your sanity. Try explaining to your BF it's for your mental health. When I pick up my SS21 from his day program he goes upstairs to his bedroom until his dad gets home from work. I asked my husband if he was okay with it and he said yes, because I work from home and I need space. Otherwise SS is always sitting downstairs on the same floor as me and he watches me (unnerving) I have to for my own insanity. This is all I got...sorry bandage solutions I know 

Harry's picture

First check with the state and local governments agencies to see if there any free help out there. Day program? After school program?  SS is going to have to be put into a residential setting, some day some time.  He will get to big or unhinged to deal with.  Better he goes into a home now and try to save your marriage.  Then having your marrage destroyed , something happens to MIL and SS goes into the home then.  
'You didn't make SS, You have no guilt.  Your SO has guilt because of his DS Illness.  Unfortunately as guilt as SO is, he can't change anything.   This will destroy your marriage, that's a fact. Bio parents live this way where they are both guilty.  Not SP.  

Iamfine_noreally8's picture

Just as I've written this yesterday, my BF is telling me he had a meltdown at work because of everything. At the thought of this family falling apart. He is telling me SS really loves me and I know that... but I feel is beside the point of what is swirling inside of me. I feel disconnected from it all. We are talking about therapy, which we have not tried together. Has this helped anyone? 

JRI's picture

I went to individual therapy at a critical point in our marriage, DH wouldn't go.  It changed my life, actually 7 lives, mine, DH and the 5 kids.  I'd highly recommend it and good for DH suggesting it!

Iamfine_noreally8's picture

Are you still with your hubs? I have been in and out of individual therapy and it has been okay... I have started using Better Help.

JRI's picture

We just celebrated our 50th anniversary.  We have a 5-"child" blended family, SD62, OSS60, BS59, BD58, YSS57.  Yes, 5 of them within a 6- year age span.  

We had rough early years.  I hated the SKs' arrival and BM dumped them off as much as possible, entire weekends, 5 days a week during the summers, every day they were out of school.  I dreaded the month of June so bad back then.

After a particularly ugly scene prompted by mini-wife SD, I wanted to leave.  But I hated to put my 2 bios through more upset.  My divorce had been rocky featuring stalking and death threats from my ex and culminating in him kidnapping BS.  As a last ditch effort, I went to counseling. Luckily, I got a wonderful counselor who helped me so much.  I had disengaged from the whole mess and he helped me rejoin the group, become more assertive and focus more on DH.  Good thing cuz within a month, OSS came for the summer and never left.  The other 2 kids also moved in full time over the next year.

The big test came the following summer when DH had to start traveling 4 days a week.  So, there I was with all 5 kids, their many friends and all our pets by myself most of the week.  But, thanks to the counseling which I continued, it all worked out ok.

They are all grown now, we have 9 grandkids and 4 great- grands.  It CAN work out for you and it's so important that your DH is suggesting marriage counseling.  An objective outsider will help you both.  Go for your little girl's sake.

Iamfine_noreally8's picture

Wow! Thank you so much for sharing all of that with me. It is very real possibility that SS will be with us full time eventually. BM is not well and that really scares me. Like I said, I do feel so disconnected and wonder if there is love left in our relationship. I'm so glad things got better for you!!

Rumplestiltskin's picture

Does SS have a medical condition that will cause him to die young? Because if not, there will come a time when DH is gone amd SS is still alive. If DH doesn't get SS as independent as possible, SS will be at the mercy of the state. Getting him into a group home isn't "throwing him away." It's setting him up for a future when he outlives his parents. 

Winterglow's picture

Absolutely! NOT planning for his future would be throwing him away, treating him as if he were useless, as if there's no point in even trying to make something of his life... Consider your SO's behaviour towards him. He's putting his fears and guilt ahead of his son's NEEDS.

As Rumplestiltskin said, one day you will be gone and then what happens to him? He'll be stuck in the first institution that has a place for him (at best) because nobody had looked out for him. The time to start looking at group homes is NOW because the really good ones have waiting lists that can be several years long.

I have a daughter who has Down Syndrome.  She is 21 and has lived in a group home for the last year. Frankly, it was the best thing we ever did for her. Instead of sitting at home with us, she has a LIFE! She has friends, lots of activities, takes great pleasure in decorating her room and keeing it nice, and has signed up for so many activities that I don't know how she finds the time. She spends Thursday evenings here because she has speech therapy in our village on Friday mornings  so we have a nice dinner together, then lunch and then she heads back because heaven forbid she miss her dance class! She also comes on holiday with us but that is her choice. She also goes on holiday with the group. Last week she spent four days on a farm that raises dromedaries. In August or September,  she'll be going with the group for two weeks in the Alps. Oh, and she also gains work experience. 

Trust me, when I see how she has blossomed and how happy she is, I have zero regrets. Please look into all the possibilities there are for your SS because your SO doesn't seem willing to and it's unfair on everyone to keep his son from living his best life. You would all benefit greatly from this.

ESMOD's picture

This... absolutely.

The more resources you have and the more skills your SS develops.. the better his life will be... and the more independently he can live.  He should be involved in as much as he is able to with school and extra curricular activities.  You should have respite care available.. it should not be all on you and your household all the time.  He will be your BF's son "forever"... but that doesn't necessarily mean that being at home with you is the best place for him to thrive.

Outside the issues with his son.. what is the balance of the ledger though?  Does your BF earn a good living?  Is  he clean of any drug or alcohol issues?  Does he have any vices that makes your household more difficult?  Is he kind and supportive to you and your child?  If the son is "just one more way" that it's difficult.. rethinking the relationship may be necessary.

Harry's picture

To get your ducks in a row.  To see what the row looks like.  If you don't do something now, your will be trapped in this life,  you first must figure out if you are staying or leaving.  DH must see this playing out or else he wouldn't be playing the SS loves you card,  He now by guilt is putting SS before you and your marrage.  

 DH is not doing SS any service keeping him at home. At least in a group home he will have friends. Have activities to do everyday.   You should start looking into homes.   
All of them are different,  Saying SS is autistic, doesn't tell us , of what level he at.  What are his capabilities,  can he actually work, at home.  A job will give him something to do, look forward to.  It really doesn't have to be a paying job he can volunteer his time to start. Just something to take up time and he feels like he is doing something of meaning 

Iamfine_noreally8's picture

I completely agree getting him out and involved in other activities would benefit him greatly. SS has gotten more severe since I've known him and has been diagnosed with ADHD and possibly Tourette's. At this point, he is not able to be left alone at the house, he requires a lot of guiding and refocusing, but is able to do basic things (go to the bathroom, get dressed, make a drink/snack). He has a lot of sensitivities and outbursts that make it difficult to take him on outings. He loves art, but can't read or write very well. I am not sure on his own or in a home what he would accomplish. I know my BF is playing the guilt card even though he said he is not... he is scared for me to leave and he knows that is a possibility. In the years that I have been with him, I have not seen him do much to help SS development although he does do a lot to keep us safe and comfortable. I know he loves and cares for SS so much but I also know he feels resentment for the situation. I am in it now, but looking back I wish I had never gotten involved. And he is well aware of that. :( 

JRI's picture

My guess is your BF doesn't know what to do for his son.  That's why therapy will help him, whether you are there or not.  He sounds like a good guy, just doesn't know what to do.  I wouldn't, either.

Winterglow's picture

The point of a group home isn't for him to accomplish anything. The point is to give him the gift of a life of his own, letting him learn to do things on his terms, letting him be with people who understand his issues and who are are on hand to help him. There is no minimum requirement for capacities for admission (my daughter can't read or write either but she is absolutely thriving!). Please, just look around at what's available before making any (uninformed) decisions. Try to get you SO to open his mind to other possibilities for his son - he could be depriving him of some great opportunities just to feed his own guilt.

Your SO already resents his son - do you think his son doesn't pick up on that? Imagine how much worse it could be in another 5 or 10 years...

Iamfine_noreally8's picture

Sorry, my meaning for saying what he would accomplish was positive as in who knows what is in store for him if he is not given the opportunity. This is why I came on here to get input from people like you who have been through similar situations. Thank you so much. 

Rumplestiltskin's picture

I learned this through your posts, Winterglow, and also by the fact that it was a storyline in Call the Midwife (an elderly woman dies and her mentally disabled son is found wandering, and ends up thriving in a group home after much drama.)

Winterglow's picture

Thank you so much. I think we underestimate people who are different. I have learned that they are not on the same plane as us but that they are not less than us. My daughter has a level of EQ that is off the scale. Thank you for your kind words. Smile

Rags's picture

Just in a read through of this thread, I would say that there is plenty of love in your marriage and family.  Your DH is off base entirely with his meltdown over the demise of his family. There is not a demise, there is a shift that must happen with his SN kid.  The kid needs to be supported with expanded out of the home and family human interface ultimately leading to a group home for him to life his adult life in.  The SKid needs it, Dad needs it, you need it and your own children need it.

I can understand the heartbreak and guilt, though the guilt is unfounded IMHO, that everyone has regarding this special needs kid.  IMHO, the goal is to maximize the kids life and not limit his life to just family and the family home. Even more important is to minimize the impact that this special needs kid has on the quality of life for everyone else in the family.

Get to therapy, go full engagement on getting this kid into OT programs, special needs enrichment programs, all state support available, and get him on the list for an adult group home now. It can take a very long time to get placement so getting him engaged with every program, support agency, therapy, occupational therapy, behavioral therapy, and on the group home placement list is what is best for him, and for everyone else.

IMHO of course.

Take care of you.


Thumper's picture

(((HUGS)))) I am sorry you feel stuck and unsure.

Something to think about:

Your obligation is to your own biological child,  ONLY

There is no moral or legal obligation to care for your 'boyfriends' child.  I am not saying that to be flip or arrogant.  I am in no means saying to ignore a special needs child. 

 I am saying you are FREE to say no BF, you will need to find suitable care for him when you are not inside the home. --. NO BF, you will have to take him to xyz. NO BF I will not watch him during the summer, YOU will have to talk to bm and find suitable safe care for your son.  ***OP, agreeing  to take ss somewhere because you want to,  is different that feeling of obligation because you live with bf***

You are feeling stuck because you are not sticking UP for yourself. 

This arrangement will not get better.

Your bio child needs YOU full time. Now that is your moral and legal obligation.