You are here

Can this relationship be saved?

Mimi2015's picture

Hi.  I just joined StepTalk, but I have been reading some of the blogs and comments for a while.  I am really glad I found this forum because I have not found much on the web about stepparenting a special needs child.  Every site seems to offer the same generic advice and encouragement, but little else.  This is my first post, and I apologize for it being so long but I genuinely need to let this out! 

I have no children, only dogs, and no prior experience being a parernt of stepparent.  I am engaged to a man who has a 13 year old severely autistic daughter.  He and his ex-wife/the child's mother have been divorced for about eight years, and they do not have the greatest relationship.  Neither of them has any other children.  They share custody (her mother has her most of the time since she does not work but lives off her substantial child support and alimony from my fiance), but they rarely follow their custody schedule.  Her mother often drops future SD off with her father and me when she "needs a break" or "does not want to deal" with future SD.  The BM also seems to want to outsource everything child-related to other people; my fiance spends a literal fortune on aides and afterschool/weekend in-home therapy visits such that the actual time BM spends caring for SD is only a few hours on school days and *maybe* a few more on weekend days if she cannot find a babysitter, schedule a playdate, or drop future SD off with us.    

I grew up with an autistic older brother and worked for a child/adolescent psychiatrist previously, so I know quite a bit about ASD and the standard treatments and therapies.  My fiance and his wife, on the other hand, are not particularly informed about their daughter's condition and as a result typically do not reinforce what she learns in school and in therapy at home.  There are also several troubling behavioural patterns in place that no one is even remotely trying to change (e.g., she hates medical procedures so she has not seen a dentist in years).  Although she is quite verbal for an autistic child and definitely not stupid, she cannot read or write, does not know basic information like her parents' full names and addresses/phone numbers, has a terrible diet, and still has not mastered basic hygiene.  Even though she is taller and heavier than I am, her parents still treat her like a baby.  They do almost everything for her and refuse to teach her how to do necessary daily tasks (like putting her dirty clothes in the hamper) or household chores (like setting the table or making her bed).  To make matters worse, her parents refuse to properly medicate her.  Despite the recommendations of her pediatrician, she is not being treated by a child psychiatrist.  She rarely sleeps through the night and thinks it is funny to wake everyone else in the house if she cannot sleep.  She also insists upon crawling into bed with her father and me instead of sleeping in her own bed, which forces one or both of us to get up and walk her back to her room multiple times per night.   

Consequently, future SD has grown up thinking the world revolves around her.  She frequently refuses to do things she does not want to do and throws tantrums if she does not get her way.  Like many autistic children, she lacks empathy and rarely thinks about other people's feelings.  I cannot watch TV or talk on the phone in our den or play music while I cook because she does not like noise.  Even if I have it at a low volume she will turn all the electronics off, and her father does nothing to stop her, much less work with her on coping skills.  I am thus forced to watch TV, make phone calls, and listen to music only in our bedroom and only with the doors closed and at very low volumes.  Meanwhile she is allowed to blast music and videos on her iPad nonstop!   Last year she started being both physically violent toward her mother and destroying items in her home.  Her mother also bought a small breed puppy, and while future SD usually adores the dog, on several recent occasions she has threatened to throw the dog in the pool or down the stairs.  Fortunately, someone has always been able to grab her and stop her, but she just laughs and does it again later.  While she has yet to try to hurt my dogs or me, I am already a little scared of her.

Initially, my fiance was thrilled that I had prior experience with autism.  When I first met his daughter, we got along well.  I try to model appropriate behaviours, give her the kind of structure and routines she has at school, and set limits, and thus far she has always responded well to me.  Ironically, she rarely tantrums when I am around and seems to like me. I talked to my fiance a lot about my experiences growing up with an autistic brother and described ways my parents and I had dealt with some of his major challenges.  I also discussed the common pharmcological and therapeutic treatments for ASD that I saw working for a child/adolescent psychiatrist and encouraged him to investigate them.  He always seemed to welcome my ideas and advice, but over time it became clear that my fiance and the BM have zero desire to actually do anything differently.  My opinions about how to fix some of the negative behaviours and bad patterns became "overstepping bounds" and evidence that I did not love his daughter.  So in the past year, I have gradually distanced myself from future SD.  While I continue to cook and clean for her when she visits our home and I am always kind to her, I no longer make suggestions or encourage her to learn to read or reinforce what she is learning in school and in therapy.  I feel my role in her life should essentially be limited to keeping her safe from harm when she is with us and enforcing the very limited rules/restrictions my fiance has set for her.  While I am worried about what will happen to her during adolescence (a notoriously rocky time period for autistic kids, especially unmedicated ones) and how she will ever transition to a residential facility as an adult, I have no legal rights to this child and do not feel it is my responsibility to raise her or force her parents to do a better job of raising her.       

My fiance has noticed my mild disengagement, and he does not like it.  Yesterday we had a huge argument because he accused me of being selfish, not wanting to have anything to do with future SD, and not caring about future SD.  He was really harsh and nasty; his tone and language were just MEAN.  I pointed out all the times I had repeatedly discussed my concerns for her and had willingly taken care of her.  I reminded him of all the things I do for both of them despite the fact that they rarely acknowledge my contributions and my feelings are rarely considered, particularly when he and his ex decide to swap custody weekends or his ex suddenly decides to leave future SD with us so she can have a break from being a mother.  In addition, I finally said aloud what I have been thinking for a long time now: "Don't come at me because you and your ex cannot cope with having an autistic kid!  I did not give birth to her.  I did not do this to you.  It is not my fault, and she is not my responsibility and not my child to raise.  You can raise your child as you see fit, but don't get angry at me if I do not necessarily like or approve of how you do it.  And don't accuse me of not caring about her either. You know full well I care more about her than her own mother and am worried about her future."  He did not really deny anything I said, but he just kept reiterating that I do not love or have empathy for his child.  I then replied that sometimes his child is awfully hard to love and that while I may not have as much empathy as her biological parents, I have a hell of a lot of sympathy for future SD because she is not being adequately prepared to cope with the real world.  I also added that he had some mighty unrealistic expectations about stepparents and that everyone in our family unit has to adjust - I cannot be the only person doing all the accepting and changing.  I told him that I feel like no matter what I do, it is never the right choice and never good enough for him.  If I try to be a hands on stepmother by implementing routines, requiring future SD to behave better, and being more involved with her studies and therapy, he accuses me of meddling and being too strict.  If I limit my contact with future SD and do not actively help my fiance take care of her, then I am an uncaring, selfish person who does not love his child.  I told him that I never know what he wants from me and I cannot win.  We have barely spoken since, and he is still furious.

I have asked him many times for us to go to counselling with a marriage and family therapist, including during yesterday's argument.  He claims he does not have time, but I can go on my own because I am the one who is having problems living with him and his child.  I feel like I should make an appointment and go, if only to confirm that I am not out of line. 

But after yesterday's argument, I just have this overwhelming feeling that we will never marry.  I love him.  When future SD is not around, we have a lot of fun together and enjoy many of the same things.  If he would agree to my having limited involvement with future SD, I could tolerate living with her.  While I care about future SD, I cannot yet say I love her, but I still try to be a positive force in her life and generally treat her the same way I treat my friends' and relatives' children. But the way he spoke to me yesterday, his unwillingness to go to counselling, and the fact that he seems to want an unquestioning robot nanny/cook/chauffeur as a stepmother have me feeling like our love is doomed.           

I quit my full-time job to move to be with him (I now only work part-time for a lower salary and limited benefits).  I have some savings, but if I leave and cannot get a full-time job quickly, I will soon be financially screwed.  On the other hand, I do not know how much more I can take.  Being falsely accused of not caring about future SD is bad, but being forced to live in an environment where nothing I say matters and future SD is allowed to behave abominably and run roughshod over my feelings is not a viable option.  

Can anyone help?  Am I not seeing something or misunderstanding something?  What do you recommend I do?  Thank you for listening and any advice you can give me.             

         

   

 

 

 

Indigo's picture

I stopped reading partway through, to be honest ...

You are not a glorified nanny-bedwarmer. 

Your SO is likely not the leader of a small country and even living 45 minutes from the nearest gas station, I'll bet your SO can find the time for counseling.  He's dodging.

Dr. Phil's "Doctor on Demand" is 24/7 if I understand the ads correctly.  Maybe SO's insurance carrier will sponsor such interaction since it has become so main-stream. 

Aside:  actually I am laughing because within the last 10 minutes, I've just been texting/emailing with my ex-DH in Angola who is looking at a job on the Ivory Coast of Africa. No matter what my Ex says about how important he is, my ex-DH made time to speak with me about a situation with BS. 

Your SO is ...too important, too busy to parent or to invest one hour of counseling to find common ground in your relationship.  BM is overwhelmed naturally and taps out, but it's not SO who picks up the tiresome young person on the Spectrum. ARGH.  I'm stuttering a bit here.

I stutter-stopped on reading your blog and even in offering advice. Nothing popped up as unusual in my experience with ASD youngsters, other than parents abdicating responsibility to another.  Responsibility without authority, overall.

Children on the Autism Spectrum are challenging. Like seriously, challenging.  Like, no jumping up and hugging you enthusiastically, challenging.  Many of those social cues that help us as a care-giver/parent to connect with a child are missing.

BTW: judgement call but not judging you in my mind.  To me, you likely don't "love him" as much as you love the idea of him, the person you thought he was, the person you thought you would grow old with, the person thought you could shape him into ...

Look for the exit rows on the plane.

DaniellaR's picture

Your SO didn't get with you because he loves you, he wanted someone to take on the burden of his child. Reading your story, when you said your SO was thrilled to find out you have experience with autism, it is like he had been interviewing tons of women and finally found the right nanny for his child. You are in the relationship for different things- for you it is love and for him, it is for an unpaid nanny. Men that are head over heels in love will do anything for their partner. They generally show love in caring for their partner. If I asked my husband to go to counseling, he would be more upset about our marriage being in such a poor state rather than the physical act of going to counseling. Your SO refusing counseling is just another of the many ways he is showing you that he was never in love with you and does not want to invest anything in your relationship. You deserve much better than your SO. I would persue counseling alone and work through self esteem issues that are keeping you in a bad relationship with a man that does not love you. I don't mean for that to sound harsh, please don't take it that way. It is always easier to look at things from the oustide and without feelings affecting anything. You deserve much better. Try to look at your relationship as if your friend is telling you all of this and think of the advice you would give her. 

futurobrillante99's picture

You characterized this girl as “severely autistic” and say you have a lot of experience with ASD.

I gave birth and raised 2 sons on the autism spectrum and the young woman you describe as verbal is not severely autistic.

She may be midway on the spectrum or in the low end of high functioning, but surely not SEVERE.

so, you lost me. I agree with the others who say daddy wants a nanny and bed warmer.

Mimi2015's picture

I did not explain it properly, but to me she falls more on the severe end of the spectrum because of her functional challenges.  She is verbal in the sense that she can articulate words clearly, but she does not speak in an organized or linear fashion.  Her speech patterns are repetitive (she will ask the same question over and over despite being provided with the exact same answer every time), and her aural comprehension is very limited. Getting her to answer a question or follow an oral instruction is extremely difficult - and usually impossible.  

As for other symptoms, she stims and spontaneously shrieks a lot.  She is very sensitive to temperature changes and hates any sounds louder than the average speaking voice.  Her fine motor skills are getting better because she likes to draw, but she is still quite clumsy in her movements and has difficulty with spatial relationships.  She has almost no short term memory and minimal long term memory recall. 

Again, some children plainly have more severe issues, but she has been functioning at a 3-4 year old level for years based on the reports I have seen.  And given the situation with her parents, this seems very unlikely to change.      

justmakingthebest's picture

I agree with the others, I am sorry that you are having to go through this.

My suggestions to start would be look for another job. You said that you are working part time right now. Start there, tell your fiancee that you aren't feeling fulfilled in your current position and you need this. If he doesn't support you in that, you will have an answer very quickly on how he sees you as the nanny. If he does support you, GREAT! Maybe it isn't as bad as we are thinking. 

Start counseling for yourself. You may be able to get him in on a couple of sessions, but in life you can't change other people, you have to love them and accept them as who they are. You may find, Like Daniella suggested that you loved the "idea" of him and not the actual man. OR we could be totally wrong and he snapped because he feels safe with you and you were the one he could count on to still love him after. That happens. It is wrong, and he should apologize for that, you are not an emotional punching bag! 

Join a support group in your area. Once you find a counselor, you will be able to find care giver support groups. If you plan to stay, you have to take care of yourself. 

Also, on a side note, I am new to dealing with a teen with Autism, he is semi- high functioning- he can do basics, he is verbal, he wont ever live on his own or have a real job or anything fancy like that. Noise really bothers him too. I will say that if he ever came into the room and turned off my TV or music or anything else, he would see a bad side of me. He goes to his room when he needs a break. That is his safe place. You need boundaries and if your FDH won't set them, set them yourself. Tell her if she doesn't like it, go to another room. This house is yours too and you will not have a child dictate what you, the adult, will or won't do. 

ndc's picture

I would leave that situation. Only a saint or martyr could survive that long-term, and I'm neither.  What makes you think that this SD will not be living with her parents forever? There is no end game in sight. Your contributions aren't appreciated; your advice is not taken. It is a lose-lose situation for you.

A more promising future than this is worth the short term financial pain.  I would get out. If you need to do it in baby steps to get yourself finamcially prepared, then do that. Can you return to working full time before you leave?  Do you have family who can help you?  in any event, this is not a healthy, sustainable situation for the long term.  

Rags's picture

Rather than can it be saved IMHO the question is why would you want to save it?

smh

I respect your desire to rescue this family but in some things discretion and avoidance are the better decision.

Good luck, take care of you. Let this situation fade in the rear view mirror as you move on.

notsobad's picture

Do not marry this man.

He is showing you who he is, believe him. 

Step back and take a good long look at him, his priorities, how you fit into his life and where your life is going with him.

Is this where you want to be? Is this the type of relationship you want to have? Not in the future, right now. Because nothing is going to change, it’s not going to get better, what you see right now is how it’s going to be for YEARS.

Do not lie to yourself and hope things will change or get better. Do not lie to yourself and think you can love him enough to change him.

Decide if this is the life you are choosing for yourself.

MoominMama's picture

I agree with others, your DH is taking advantage of you as is his ex. It seems they want another pair of hands to help with their AS daughter. Being around people with autism is extremely challenging. If you were taking a job working with AS people then you can walk away at the end of the day, but when you are living with and caring for them it is much harder. Not only that but you will be expected to love her like she were your own because you are SM. It just doesnt work like that, even with skids who are not on the AS.

I think you really need to have a good think about what you want. This situation is never going to change. The SD will always be autistic and her parents will always put her needs first, its understandable. Her father will always be paying huge sums of money for her care. Nothing there will change... EVER.  So ask yourself - is this what you want for the rest of your life?

I live with a high functioning AS step son. It has been a nightmare and still is and he is high functioning. The amount of work you have to put in is exhausting. We are working towards him being independent as we can't take much more of the way he goes on. I think a lot of his problems are actually not as AS thing but that's a long story.

If I were you I would move on.

Harry's picture

what the end plan.  Is SD going to live by herself, in some type of home.  Or with you for the rest of your life. I could never stay there is I was ti care For SD for the rest of my life.  It’s Not my child, Not my guilt that she is that way.  I would want a SO where I came First not his DD.  I want to enjoy my life. Go places, see things, do things. Not be a unpaid nurse