major life challenges for difficult child - how do i help her?

[cmdh]

wow it's been a long time since i visited here.

i really miss everyones input and support.

well right now i'm looking for some help for difficult child. Her typical autistic behaviors are doing much better (as is her health)but now there is the stress of the past years events complicating matters. I'm so frustrated. As i told her I just don't know how to help her. I'm researching psy etc to take her to but i need to educate myself quick so that i can help her as things come up...

here is what i'm trying to help her with in the last 1 1/2 years...

other parent person (husband just doesn't fit, and not yet xh) was hurt on the job - he defied every odd by not dying.

While working on the damage done from the accident the doctors found a serious heart problem - could be from the accident. this problem lead to 7 hr surgery to try to correct the problem.

3 weeks later he had at least 4 strokes, 2 blood infections a hole in his heart and his esophagus. we were told he would not make it (again). of the 19 reported cases of this complication of his heart surgery 17 were found on autopsy 2 made it into surgery and never came out. difficult child kissed him goodbye.

he makes it through on a vent w 3 garden size hoses suction machines and about 7 iv bags going. difficult child saw him after he was off vent. dr said he was not going to upgrade his prognosis (he's going to die) until they can prove everything is healed and he can eat.... 4 weeks later (I stayed in the hospital 99%of the time and difficult child went back and forth with grandma) we life flighted him to mayo. difficult child and i followed....

i'm sure those with autistic difficult child can imagine how just this would disrupt a child that has to have complete order in her life. she did well and i did everything i could to keep a calm nature etc.

after some time a mayos i brought him home for a nurse to come in and help me take care of him. he was impossible, verbally abusive and i really thought he was going to let loose on me. i sucked it up as long as i could knowing he was just frustrated ect... until one day i snapped. i couldn't do it anymore. i had no help except my mother. his kids hardley helped at all. they came to visit but thats it. i asked for relief one night (i slept there everynight to take care of him) and everyone said they were 'busy'. I told him he had to go stay with one of his kids for a while (believe me he was doing just fine medically - he was throwing a big grad / birthday party for another of his kids. i asked him to talk with someone and i would do the same. he managed to ommit several key facts to the psy.. eg. his heart surgery, the fact that difficult child is special needs and that his kids run him on guilt. He filed for divorce and said he cant forgive me for telling him to leave.

so now difficult child is trying to deal with all of it. right now i think it's just that dad isn't here. she doesnt talk much about the two near death problems. she crys and takes it out on me.. punches me yells at me and falls back into her difficult child 2 year ago behavior.

anyone out there have an autistic difficult child having to deal with divorce and or major loss. there are a lot of resources for loss but lets face it our kids handle things different.

thanks

 

[Sunlight]

my kids are not autistic. what did struck me about your story is about your soon to be ex. you would think a man who defied death would be so appreciative and happy to be alive that he would be a turned around man with a heart now of gold.

my ex was verbally abusive, terrified me and my sons with his disappearances, weird behavior and passive aggression, depression. I was losing my mind with him as well. he was diagnosis with colon cancer after we had been married 30 yrs. he was not expected to live and if he did he was to have a full time colostomy bag. thru the grace of God and friends, I never let down my search for help for him, both psychiatrically as well as medically. With much effort I located a colon specialist new to Alleg general hospital in pgh. this doctor had just arrived from cleveland clinic. he was able to completely eradicate the cancer as well as reattach my husb's bowels so he was hooked up normal and could live well. when he woke from surgery his brother begged me to let him be the one to tell my husb we thought he was completely cured and that he did not have to live with a colostomy.

ya know what he said? "that sucks!" he did not want to go back to work. when they released him to return to work in a few months, he refused and told me he would starve himself to get a disability. he hid his medications, he sabotaged things, he called me names, ran away a few times. when he was down to 120 pds (at 5 feet 9) they put him in a psychiatric ward. while there, my brother the lawyer forced me to go see a lawyer friend of mine and get a divorce. I did. best thing I ever did I swear.

my ex is still miserable, a hermit who looks and acts weird. he hates everyone. he is still trying the starving route. no one is listening. he is on a pscyh disability as he wished. I am free.

your child needs to be in a peaceful home. having her dad there could mean even more trauma. I would say to make sure her days are carefree as possible and keep her out of the drama of daddy's world.

I feel for you. I spent 11 months with my ex thru hospitals, docs and surgeries. it is tough.

 

[tiredmommy]

{{{Hugs}}} I've often wondered what had become of you & your family. I'm sorry you had to find your way back here. :frown:
I would think that some sort of therapy to help her express her very strong feelings may be helpful. Also, it's important to remember that no matter how difficult opp was/is, she probably still has a great deal of love for him and is in a sort of mourning for how things used to be.

 

[Marguerite]

I can understand why you've been away from us - you had enough to deal with (and more).

Of course this is going to affect difficult child. Do you have her seeing a counsellor of sorts? For something like this I would have difficult child 3 back to his psychologist, who also deals with the practical issues of helping him cope with his anxiety and stress.

It sounds to me like your husband is totally self-absorbed right now. This was a good thing, in that this degree of self-absorption was needed for him to survive - that really was extraordinary. But now, it's unhealthy, for all of you.

I'm not there, I can't tell you how to live your life, only you can make that call, but I do agree - difficult child MUST have stability. Your husband is out of danger now, you need to pull back and focus on the damage this has done to you and to difficult child. If you can keep things amicable it would be good, but if he isn't being honest and is trying to twist things to his way and to self-pity (and to get other people's sympathy) then you need to give yourself and your daughter more priority for now.

You can take your time out without it being an official separation. I can't see why he immediately thought that asking him to stay with someone else to give you much-needed rest, constitutes a separation. I've had husband leave me for a few weeks (more, now I think of it) when he went to stay with mother in law (before she lived near us) because she was having a complicated recovery from heart surgery. It certainly wasn't a separation, even though we were apart. We missed each other but I admit I DID get into the habit of spreading out in the bed!

When my sisters had their babies, they left their husbands for about two weeks to stay with our mother. It was a bit of extra respite with a new baby, but it was rare for their husbands to come too. That wasn't separation either, not in any official way.

When I developed my PTSD, I had a head start. Due to the other traumas at the time, I was recovering as I saw everyone else around me go down with PTSD over the next year or so. Some people just said, "I feel so listless and sad, I don't know why," and often they needed some time out of their lives for a short while, to deal with it. husband took himself off to a retreat for a weekend, it helped him enormously. There was nothing formal, just silence and solitude, away from a noisy, needy family. He needed the time for himself and because I needed HIM in one piece, I was happy to let him go and recharge his batteries. Our situation was complicated by the environmental and ecological disaster that we endured on a twice-daily basis, every time we went out to work and came home again. When you drive on a road you know like the back of your hand, but feel disoriented because there are no familiar landmarks any more, plus you can hear them dynamiting the few undamaged sections of forest left (and we're not permitted to go and see it for ourselves) the trauma continues and affects everyone. We watched the whole town go down like ninepins with PTSD. Some were worse than others - the man who was carpooling with his best friend, who was the passenger the day a dead branch blew through the window and harpooned the driver, needed even more hep for a long time. We all know these people, the passenger was in deep shock at being so close to his friend's instant death.

You need your time out. I didn't read anywhere in your post that you had asked to end the marriage - it sounds to me like he chose to interpret it that way (once again, pure selfishness, which was a good survival skill when he needed it but it's time for it to go).

If you want to save this marriage, get into joint counselling. Individual counselling as well would probably also be OK, but counselling together is what you both need, to face each other with honesty (and to HAVE to be honest, and be called on it). You've both been through the unthinkable and this has to take its toll on the best relationship. The time apart you both need is to get back in touch with where your relationship should be. You've been in carer role for too long, and he's reacting like a child asked to leave home.

If you don't want to save this marriage, I still think joint counselling is needed to help you both establish ground rules for co-parenting a difficult child. There is a lot of emotional baggage to work through before you can get to the practical stuff, but it has to be endured. It WILL be worth it, if you can both stick it out.

Right now, you and difficult child (she especially) need stability. If you can keep reassuring her that you will not block her access to her father, that you're not shutting him out from anger, just that you need a rest and he needs someone else to take a turn looking after him while you get better, it might help. The trouble is, she IS still very young and it will take a lot of careful, repeated explanation for her. Maybe if you wrote it/drew it in a small book for her, as a simple comic - "Daddy's been very sick, the doctors thought he would die. But Daddy didn't die, he is very tough. Now that we've helped look after Daddy for so long, Mummy is tired and needs to rest. Daddy needs to spend time with his other children, too, because they missed seeing him when he was so sick. He's their Daddy too and they love him, just as you love your Daddy."

You get the idea. There are several ways you can make this book - maybe the easiest is the photo album method. You type in the words in big print (if she's not reading yet it doesn't matter, just keep the text simple) and you include photographs or drawings on the same page. basically, make a picture book. Print it on letter-sized paper (whatever is standard for you - US legal?) and put the pages into a photo album that she can turn the pages of easily. Read it to her often. If he's seeing her at all, would he read it to her? Or is he being too much of an ornery pig?

Having it in writing can make it real for some autistic kids. The photos can also remind her that this is TRUTH because the photos are the evidence.

It sounds like your husband is behaving like a spoilt brat. He probably feels he's entitled. But it is time for him to work to change that attitude and wake up to himself, but what he is doing is very familiar to anyone who has nursed someone through such a critical time.

Frankly, I think you did the right thing, spitting the dummy like that.

I hope you can work this out at least for difficult child's benefit.

Marg