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Not sure whether to leave or disengage

sharms2010's picture

It was a year ago that I was writing here about calling CPS on BM for neglect and how nothing came of it. The past year has been pretty rough trying to get autistic SS10 back into a functioning child - wiping himself, brushing teeth, not lying, etc. etc. I found books, charts, social stories, worked with the schools, went to IEP meetings, etc. etc. etc. and then DH lets him go back to BM's for the last half of the summer and trash all the work we had done. Actually, I take that back. All the work I had started and DH half heartedly helped with.

We get him back and during this time are buying a house to get someplace stable since the house fire in spring 2012. He's reverted to not wiping again, not brushing teeth, not washing in the shower, lying... the list goes on. I start the star charts again, buy more books, research ways to combat this and help him and he's now older and more "I don't care" because he's older. DH is blasé about it all. The not wiping thing super bothers me. It's absolutely disgusting. I can't stand it.

So we then start pretty much 24 hour supervision. Standing there to make sure he wipes, standing there while he showers, standing there while he brushes. If we don't he will say he did and not do it. I catch him all the time just standing there to pass time so he can pretend he did it. Well, I THOUGHT *WE* were doing the supervision. Turns out DH goes in the bathroom and watched SS put the toothbrush in his mouth. The he leaves to go watch tv or screw around on his phone and come back 2 minutes later to tell SS to stop. SS hasn't brushed during that time because nobody is watching him. So, in frustration I buy the pink tablets that show where plaque is so that we don't have to stand there for that at least. He can brush then chew the tablet and re-brush as many times as needed until it's clean. Guess what, DH does it a couple times then start "forgetting" and SS stops brushing. It's a freakin cycle. Same with shower and wiping and whatever else is next in the long list of things a 10 year old boy needs to learn to do for himself SPECIALLY IF HE HAS AUTISM. He HAS to have consistency to understand it's REQUIRED.

So pretty much as time is going by I realize that I keep coming up with plans to try to fix things and DH is all on board, then he slowly stops being interested because it's a huge pain in the ass and SS reverts because now it's only me who is making him do it. I'm getting frustrated and getting more snippy with SS because if he'd just freakin do what he needs to do the whole family would be better. I'm starting to yell at SS more often and resent him and my DH. It's getting to the point that I'm losing it with SS on a daily basis and feeling like shit afterward. I've apologized to him a bunch but yet I'm so at my wits end that I just am full of rage and frustration.

So after this summer DH was adamant about not letting SS10 go back with BM. She moved out of state and never notified the courts so is in contempt and knows this. I was so happy about this new attitude because getting SS back to a functioning child is a several month long project that is a serious pain in the ass. Then, it happens. DH says "well maybe a few days for Christmas vacation wouldn't be bad. He should be able to see his mother. And we could use the time off." This was after I suggested to him that she could come to our house and see him so that we could supervise (he didn't want that because he doesn't want her here.). Oh, there was also a flipping off and racist comments incident at the school that we know he got from her house (she posted a picture of her new husband flipping off the camera with SS sitting next to him laughing). We don't do that stuff because we know he will mimic it.

I think DH's comment broke me. I'm sickened to look at SS. Like seeing him represents 7 years of working super hard to help him when his parents won't follow through. Since my DH's comment, I've really flown off the handle with SS, to the screaming point and I can't control myself. I'm so full of rage at all I have tried he refuses to follow simple rules like wiping his butt or using soap (not totally his fault he's a kid that doesn't see the point and not getting the guidance from his bio parents). I can't control myself anymore and I'm constantly feeling guilty. Right now the only time I'm around SS is to drive him to school and I'm not even talking to him for fear that I'll yell. I'm having a really hard time not getting mad at him. I feel really out of control emotionally and overwhelmed. I took today off so that DH and I can talk while SS is at school.

Speaking of that, that's another huge issue. Now that BM moved out of the state we never have time without SS (almost 3 years now). I don't have any family in this state (I moved here to be with DH because he had kids) and I don't really have a close relationship with my parents. DH's family is 3 hours away. We never get a day off. We had tried to find babysitters but have only been able to find services that charge around $20 an hour with a couple hundred downpayment. We just cannot afford that for going out to have fun. Child care is super hard because he doesn't play well with other children without things being very structured and even then you can pretty much guarantee that 2 out of 5 times he will have a meltdown because he didn't win or the other kids weren't playing exactly like the rules state. Most child care centers aren't going to deal with an Autistic child. I've been putting so much work trying to find services or support groups for us and keep coming up short. I also have no support network. Since I moved away and with constantly being consumed with working on this family, I've lost most of my friends and the ones I have left don't have kids and just don't understand. I feel completely alone and I'm furious, enraged, sad, emotionally distraught, overwhelmed, in turmoil, guilty, depressed, and just pretty much hate life right now.

Comments

SteelRose's picture

I raised a daughter with disabilities, too many to go into detail on, but it was hard and even tho she was my own flesh and blood I had to finally have her put into a staffed home for help b/c I was burned out. That was my own flesh and blood and I still burned out. My ybs15 is high functioning and I have trained him since 1 yr old how to do all those life skills things and he still struggles. I am not sure if I have anything positive to say to you to keep you going b/c I gave up on my own, how you are still going with your sson and no support from the parents is beyond me - you are amazing! I had to train my ss16 how to do all those life skills when I first came into his life at age 12 but he did slowly pick up on things and slowly did not need to be supervised, then I joined this group and knew for my own sanity, since I had already burned out once, I had better disengage or I'd leave. I'd leave b/c I knew ss would not go back to his mom and DH would not let him, thus if I did not disengage I would be the one who would HAVE to leave. It's sad when parents won't engage, but as a parent of a severally disabled child, there does come a point where if someone else takes up the slack why try anymore? You have given your DH and BM the "out" they needed from raising this kid properly. If you disengage now YOU will be the one who looks like you're dropping the ball on this kid. SUCKS. I have no answers, and I just summarized everything you just said...SUCKS.

sharms2010's picture

Yes, this sucks and I'm so sorry to hear about what you've been through. My SS is high functioning but we've definitely talked about how he's probably not going to be able to live independently when he's older. Makes me so sad and I try so hard so that he can have a chance at a future, but I can't do it anymore.

I decided to disengage and it's actually kind of working... at least for me. Everyone else is not happy about it. At this point I don't care who thinks I'm dropping the ball. I can't take it anymore. After only a few days my husband is already getting frustrated and even gave me a snide remark "I don't have the choice to just stop because there's nobody else who will take care of him."

He is SUPER pissed at BM because she never has to deal with this. He's frustrated and sad because our family is no longer a family. Most of all he's mad at himself because he's seeing now how much he's been uninvolved and how hard it is to "get in the groove" of remembering EVERYTHING that has to get done. He apologized to me and actually said that this is a good thing and his eyes are opening. The appreciation has definitely been flowing the last couple of days.

We also saw a behavioral therapist Monday and he's VERY concerned about SS and BM's house. He's concerned that there might have been some sexual abuse at BMs due the signs he's seeing in SS. I told DH the very same thing when all this started but was told that I was overreacting. The therapist said to try not to have SS go with BM overnight and to try to have supervised visits or at least with other family. He wants to have a few more sessions to find out more about what's going on. It's really, really nice to have my opinions validated. We'll see if he'll take the therapists words into consideration. If he lets SS go with her overnight after hearing that, I'd really have to question what kind of person I married.

whatwasithinkin's picture

he said we could use some time off from ss?

really because it seems to me that he has plenty of time off from SS since you seem to be carrying the load.

unfortunatly in a situation like this one where a child needs constant care regardless of age disengaging isnt an option because living with him with noone taking him and his issues on would probably be maddening.

leaving may be a way to drive your points home, you know the major point of he is your child and why do I care more about him then you do?

sharms2010's picture

Well, I've decided to disengage for now (see my response to SteelRose) and it seems to be working for the most part. How I'm doing it is that I told DH that since SS refuses to wipe his butt, use tissues, sneezes on things, etc. etc and I'm the one who is always nagging him to get a tissue, cover your mouth, making him wipe, etc. that when SS is out of his room DH has to be around him to wipe up after him so that I don't get sick from SS spreading his germs. When DH isn't around (the mornings) SS is only allowed in his room and the bathroom that i right next door. That way his filth and germs are contained and I can use appropriate steps to keep myself clean.

I'm not cooking anymore, I stopped doing the dishes other than my own, I don't care if I use the last of something that SS might need for one of his meals. I'm trying not to remind Dh of anything he needs to do. He forgot to get stuff for SS's lunches so SS went to school today with a sandwhich and a couple crackers. When I do lunch he gets, fruit, veggies, sandwich, yogurt and a treat (usually a homemade fruit granola bar). And I give him flavored homemade almond milk (from fruit syrups I make). Dad gives him water. So today he had a sandwich, a couple crackers and a thermos of water. Breakfasts, I make hot oatmeal with peanut butter and chocolate syrup or a fruit syrup. Dad makes grape nuts with milk and a small squirt of honey... everyday.

When we told SS that this was going to happen he was so happy because daddy has always been the one to let things slide. Daddy never nagged him. When Daddy got serious he would get really mad, but that rarely happened. So SS was THRILLED to hear this was going to happen. Guess what? SS isn't so thrilled anymore because DH doesn't have time now to let things slide and consequences are back in full force. Daddy is getting mad more and suddenly the lectures I was told to stop giving to SS because they did no good are now coming out of DH's mouth.

To be honest I really don't like this situation because the whole family is strained, but it's definitely opening a lot of eyes. Hopefully it doesn't have to go to much longer.