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Barelycoping's picture

Hi everyone. I have been here a long while, it's a good place to find no judgements and criticism for situations we are in. I have only posted once before. Well I feel the tide is changing in life and I need to know a few things. Before I narrate my thick book of a life in a short version why aren't there many posts on this disability thread? Could it be because not many people get into blended families with children of disability? Is there really so few of us? Now I am wondering what weight I was taking on when I first met DH, a very heavy one it seems very heavy my shoulders are sore now.

Back story. Am married 5 years and DH has two autistic children SS18 high functioning SD17 severe on the spectrum. It's no smooth road infact the bumps are way bumpier. DH is a Disney dad let's start there. 'No' is many at times a foreign phrase. BM I stay away by choice am not getting mixed up there because that was a tumultuous marriage horrid divorce and the shutters left are a BM too willing to handover the kids and a DH more than willing to accommodate alot sometimes I wonder why he can't say no sometimes even once twice even. 

SS18 stays with us full time, other than being spoilt rotten, tad bit arrogant somewhat rude he is alright. SD on the other hand is a handful to say the least. 

I don't understand autistic behavior and cant separate what's naughty what's intentional what's what. This is the insight I seek.

The word NO results into a meltdown, if she doesn't get what she wants a melt down is this typical behavior?

She has aggressive meltdowns where she harms herself and others I have never seen anything like it (her self harm, personally haven't seen her attack someone else I only hear stories from the past). I have a baby, from my last post I was pregnant. Twice she has put her hands on him. Not violently thank goodness more ninja like and quick especially when her dad turns his back to do something. 

She tried pulling his hair(he has very very short hair) only scared him he cried a bit but I was livid and I immediately told her father (will get to his reaction later). I very sternly told her no putting her hands on the baby ever if it's not gently. She tried to pinch him. Curious little boy goes close to her while on a walker I watch him closely so I intervened quick.

She has pulled my hair her father saw this told her that's bad to stop it not as sternly as I would like. She has hit me sneaking up on me from the back, she came from no where I tell her father he tells her no it's bad behavior not so sternly. I have personally sternly told her no hitting, it's bad behavior and will not be tolerated. She is of minimal verbal communication understanding things is difficult.

Is this typical autistic behavior or it's calculated like she knows what she is doing?

The looking over my shoulder and being super vigilant simply sucks. I am busy doing dishes laundry hobbies looking after my son when she's around I don't not take him out of my sight and those days am even more tired by the end of the day. Will not take my eyes off him any time soon especially around her.

DH is casual about it (his reaction). Telling me to take solace that she didn't mean to do that he has seen her hurt children(in the past) and it's nothing like what she's doing to our DS. I was so upset there must have been steam coming out of my ears. She didn't mean to?? Sometimes I think she knows what she's doing she isn't so ignorant.

The tide turning. Tonight will be day two she has preferred to sleep at our house when she's supposed to be at BMs. Am not pleased. I think BM could be behind it am not sure. We have SS full-time SD was 50-50 not this week it's looking like it will be full time. When DH is asleep in the early mornings at literally 5am when the baby and me wake she's up and it's just difficult because I never know when she will strike so I take precaution. Typical mornings when she's at her mum's I put the baby in the play gym and I make a hearty breakfast and enjoy it. When she's over there isn't that so I take baby everywhere with me double up carrying baby and a mug of tea then my plate of toast or bowl of cereal do you guys understand?

What if she's here full time?? This would be harrrrd  DH can't seem to ever say no to BM regarding the schedule or SD hears no to a request she has awful reactions could this be learnt or typical autistic behavior?

This also had hints of a rant. Any tips advice around this will be much appreciated and importantly insight. Thanks for reading.

Parting shot, SD it's 17 mentally she is younger not developed in relation to get actual age how would you percieve her as a little girl or a 17 year old? I view her as a seventeen year old DH treats her like a little girl we argue about this alot. 

His kids are a sensitive topic it's always being taken out of context arguments ensue is just a muddle.

 

 

tog redux's picture

That sounds rough. If she's intellectually disabled (I assume so, given the description of her), then she is functioning like a much younger child. So yes, many of her behaviors sound typical for an intellectually disabled person with severe autism. Where does she go to school? Do they have other services for her?

There is no way it's safe to allow her around your child and your DH is being ridiculous. If she hurts your child, CPS will be on your doorstep in a heart beat. Even if these behaviors of hers are expected, there needs to be a way to protect her from herself and everyone in the home from her.  Honestly, it sounds like she needs a group home or other type of placement. 
 

If your DH won't take this seriously, you need to consider moving out to protect your son. 

simifan's picture

Just because she has Autism and ID does not mean that she can't manipulate with her behavior. These seem like targeted attacks rather then a melt down. Insist she have a behaviorist work with her. Regardless of intention, physical attacks are not acceptable behavior & she can be charged and arrested even with ID, especially if it happens in the community. 

tog redux's picture

If she's so low-functioning, it may be like a 18-month-old being jealous and going after a younger sibling. Can't really reason with them. 

notarelative's picture

DH should not be sleeping in when she is there. If SD is up, he needs to be up. While her behavior may be better than it used to be, it's still not good enough for SD to be unsupervised around his other children and wife.

She's 17. Has there been any discussion about her future? You need to make it clear to DH that moving in with you is not an option. The parents need to discuss other available options and pick one. 

CajunMom's picture

While I've not had to raise a child with such a disability, I do know of one instance here locally that did not turn out good. The child with disability attacked an infant....horrific results. 

I would NOT leave my child alone with your SD. Ever.

Your DH definitely should be looking into some behavioral modification and advanced therapy. There are businesses that do this. I know. My daughter's BF owns a clinic working with children with this diagnosis specifically. And as someone said, at age 17, what are the future plans? I'd definitely be looking into some type of group home setting. If she doesn't do well with the behavior modifications through a certified clinic, your future does not look good with her in the home.

I'm sorry. What a terrible situation to have to live in. Your DH and the BM should have had her in some type of school/clinical setting for many years now. (I'm saying this because you did not mention if she has been in any type of group schooling or such). And still treating her as a little girl when she is 17 isn't doing that girl any favors. 

Harry's picture

Government help?  Day program,for them to attend. Something to get them out of the house .  

Barelycoping's picture

Yes she is intellectually disabled. She goes to a special school and on addition as I understand from BM she goes to behavioural therapy sessions and speech therapy however consistency is lacking. She is also under medication also no consistency here because sometimes between the two households. DH does not see the potential danger of her. Since I started living with DH  three years ago(crazy migration process) this is the first time she's started hiting me and now DS. DH says a group home is the last place he could ever place her he means to have them both live at home forever

 

shellpell's picture

Then you should start getting your ducks in a row and find a place for you and your baby. Your very first priority is his safety. You will never forgive yourself or your DH if something happened to him at the hands of SD. 

Winterglow's picture

Are you saying that your DH doesn't give her her meds? Does he have any idea how bad that is for her? Maybe it's time he attended a meeting with her therapists and/doctors to get them to hammer reality through his thick skull. If your DH doesn't pull his socks up and ensure consistency with his daughter, a group home may be her only choice ... He only sees her for short bursts and apparently doesn't get the whole picture.

Barelycoping's picture

I will ask DH how the behavioral sessions are going and if they are regular. BM takes care of this as she's her primary carer though custody is 50-50. I have suspected come attacks are calculated not like a result of a melt down. 

They seem not to see how she needs to be engaged in activities daily especially when she leaves special school in the next two years 

 

She gets government assistance which is why I feel there is no excuse as to why there isn't consistency. 

I leave it to DH and BM because very earlier on when speech therapy started ans and I was keen on practicing with her then it seemed to fall on just me I slowly pulled away abd left it for her parents to take the lead. 

She has NEVER been left with DS and will not be left alone with DS going forward as I see this situation very clearly DH is blind.

BM sends her to day care offered by her regular special school during holidays DH just wants her home saying he doesn't mind it mark you he looks after her as it's his choice to always have her here with us.

It's a tough situation indeed  I have told DH many times I simply can't handle her most especially now I have a little one to look after.

 

tog redux's picture

So she's probably reacting out of jealousy of your DS, like a toddler would - by hitting and trying to hurt him. 

Do you really want your son to grow up in a situation where his father doesn't provide the proper care for his severely disabled sibling, and doesn't care if she hurts your child? He's an infant now, what will you do when he's running around the house? 
 

Your DH is the problem here. He needs to be participating in her therapy, giving her meds, and addressing the danger to your young son, instead of sticking his head in the sand. He's not doing any of his kids any favors with this approach. 

ESMOD's picture

This is a hill to die on.  The fact that your DH isn't providing proper support for his child.  The fact that she needs a long term solution for her life if she won't be able to live independently.  And if that IS her future and her dad is going to keep her with him "forever"... what happens when HE passes away.. tomorrow or in 10 years?  Where is her adjustment going to be then?

And... he has another child.. and a wife that he is not concerning himself with.   Your hill to die on is that your home is a safe place to raise a child.  If your DH cannot support that happening?  Your only option is to find your own place and you don't even necessarily have to divorce.. you could live separately.  You could also investigate living in a home that has inlaw quarters where you or his daughter could live.. where she did not have access to you or your child.  But, it would be  hard to swallow being in a relationship with him when he allows his daughter's behavior to dangerously impact you and your baby.

Rags's picture

Intentional or not, inappropriate is inappropriate.  Consequences should be effectively applied. First... NO! BM does not get to dump the SD at will. You have SS full time, and BM dumping the difficult SD at will cannot and should not happen, ever, for any reason.  When BM tries it, DH needs to make it clear that it will not happen. SD only comes on the visitation schedule.  If it is not safe for you or your toddler, then you take the little one to a nice hotel until SD goes back to BM.

Time for DH to put his proverbial foot up BM's literal ass and get her shit straight.

As for SD's attacks. An 18mo old who pulls that stuff gets their hand swatted, or their butt swatted, or put on time out.  Do the same with the SD-17.  My younger brother was a biter. He would draw blood as a toddler. So, ..... I started biting him back.  He did not like that one bit.  He would bite, I would bite him back though with a lesser force because I did not want to hurt him. So he would get mad and break the skin... so.... I did it.... once. He never bit me again.  After that he understood and he stopped with the biting.

Keep her level of comfort directly related to her behavior. Appropriate behavior returns comfort. Inappropriate behavior returns discomfort.

Make it real time, and make damned sure DH gets clarity that his comparison of her past behavior to her current behavior no one gives a shit about. She is hurting you and your toddler. He either gets her under control or, she goes to a group home for developmentally disabled adults.

No middle ground IMHO.

Barelycoping's picture

Thankyou all for your insight. I clearly have a DH problem. It's like he simply cannot see will not see these issues or has his head stuck in sand as one of you described. There are pieces of advice I have gathered and will look into. Meanwhile DH needs a wake up call about SD I feel he is in great denial about it 

Barelycoping's picture

I often think he is scared of BM it's like she says bark then he asks how loud so frustrating