We get it, Annie. We really do.
THEY don't. We get that too.
It's part of what is SO frustrating. When it comes to some things, they actually ARE that clueless. And even if they did them at some earlier time, they may not have internalized the right reasons - and the reasons they had associated with the behavior may not longer apply. In THEIR thinking, there are good reasons for everything. But for us to try to figure it out... UGHHH!!
I'm HOPING the mid-20s magic has some impact on my challenging kid. HOPING.
You just described Pat exactly. However, we can't let him walk all over US... Sigh.
Annie,
May I give you some hope? I'm going to quote directly from my husband of 32 years whom I have known since he was a small boy. First of all, "R" would say, your son is "not out to get you". He is numb. He can't feel anything and this includes consequences, hurts, your hurts, expectations, responsibilities, etc. He doesn't know what he's feeling. He can't identify any of it. Because he can't "feel" it, he doesn't understand it at all. "R" always says he feels "retarded" in his brain. (Note - I didn't say that. It's what he says about himself.) If you could hear the arguments we've had over our life span together, you would just be screaming at your view screen trying to grab him through the screen to beat his head against the wall to help him make sense. His arguments for his "justifications" make no social sense or tangible sense to why he does or doesn't do things. It hurts people. It made him unsuccessful in life. It eventually hurt him deeply.
So, over the years, I became so completely frustrated and angry for how he "abused" me and "neglected" me and how he kept turning the arguments around to constantly make me look like the bad guy, I eventually died to love for him at all. I went through stages of hating him, being numb to him, looking at him like an idiot, being embarrassed of him, ignoring him. I was his victim more times than I can say because I thought we were equal partners and something must be so completely wrong with me because he was happily clicking along in his weird world and I was suffering. Nothing phased him. He had no sense of responsibility to anything and always made me feel stupid about needing anything from him because I wasn't whole in myself. I would even try to antagonize him to anger just to see him react to anything at all. I became a mess. In my mind all these years, I saw him as my abuser. But I had an awakening that God would bring.
Having to "raise 'R'" had taken all life force out of me and because of my own Aspergers and my sons, and abuses of our two extended familes, when a particular crisis happened, I had a nervous breakdown and almost died. As I lay on my death bed, bleeding, having so many scary health issues, with no money for doctors, and my husband kept choosing his church buddies over care for his wife, I had the realization of dying alone - well, just Jesus and me. Most all of my recovery came from "Jesus and me", as his crazy arguments went on and on for why he needed to put everyone else and everything else above helping his wife to live. It was awful. I would later find out that I had created this situation.
Now, before you wonder why in the world I stayed married to this guy, please remember, as crazy as this all feels loving someone like this, the truth is, they are still very lovable in the midst of all their issues and "R" really is very lovable to me. But more than that - much, much more than that, is that GOD called me to love "R". I tried to leave many, many, many times, but God would not let me. It was infuriating! I drove away, slept away, walked away, turned off my heart, but God would not let me. It was not guilt. It was not even co-dependency because I made really good sure of that. God called me to love "R" because no one else did (not even "R") and God loved "R". "R" was locked inside of his head and never meant to hurt anyone - not even himself, but he did repeatedly. I got angry- really angry because I wanted a "normal" husband who could provide for me and love me and I could enjoy his sensible conversations, etc.
But here's what happened (and this was 4 years ago this month). When I could no longer do things my way or the way I thought it should go, God had my attention. I was sick from my own Aspergers Burnout and I was dying. While God was helping me to heal, he not only gave me restored life in my body but he birthed a new life in me, I think the life he intended all along - he began to show me what Aspergers/Autism really is. I did a lot of research and listened to others who lived with spectrum issues, and I read and read and read. I also prayed all the time, and I read the Word of God. When I started to not only accept but EMBRACE (this is a very critical word) the Aspergers/Autism in my husband, my son, and myself, I was able to SEE. i was beginning to SEE for the very first time in all these years of begging God to FIX "R". I began to see that the person I was so angry with didn't exist! Please, try to understand this Annie, the "R" I had created in my head didn't exist at all! The "R" that was, all that time, was trying to tell me who he was but because I had expectations, I couldn't hear, or see, or accept what he was saying to me. I was even manipulating "R" to behave the way I thought was right. But all of this was only bandaids over a gaping wound. I couldn't even see the wound or know how to look for it.
So God had me start from SCRATCH! I had to (and still do) spend a lot of time learning how to enter his world and listen. He was always saying to me (and still does) "you don't really listen to me. You don't really hear me. Why is it no one takes the time to really hear what I say?" He told me that it is a completely "physical" experience he has in his "brain". When certain situations like me giving him lists and telling him in detail what I need done (this could be emotional needs or physical needs like house), if it gets to be too much or at the wrong time for him, his brain has this "thing" that happens and he can actually feel it. It just draws down the curtain. It shuts anything related to what his brain can't handle out. This can go on for hours, days, weeks, months, and even years. Yes, YEARS! I have to talk to him carefully and timely. Lists have to be made in a way he can handle it. He has no real friends, he tells me. I am his friend - so he says. He has lots of aquaintances. They all think he's wonderful - until they work closely with him and then he frustrates them. He told me that all these years, he's been using me as his "life gauge". (This is hardest for me to understand.) He says he "learns from me" and responds accordingly. I seem to dictate how to do things and what is critical and what is not. But there came a point where he became angry with me and began to rebel. Because I couldn't really "hear" him, he decided to go his own way. He did not cheat on me, he just emotionally abandoned my son and me.
The Lord showed me that I wasn't asking the right questions. He showed me that I wasn't really loving "R". I was wanting "R" to give me something back instead of wanting to help "R" be the person God intended - the gift he was to this world with his special challenges and gifts. It has been a really humbling process to learn what love really is. I was so angry that I was not respected - I mean REALLY, REALLY ANGRY!!! When I saw "R" through God's eyes, I realized that all of my expectations were completely on another planet compared to what God wanted me to do as "R's" wife. The secret for me was to begin to know "R" as he truly was, to stop trying to "teach" him and "train" him but to listen and to ask God how I was supposed to help. When I saw "R" in this new way, I realized that all those years I was shooting myself in the foot. I didn't even really know "R". How in the world would I know how to help him? He was locked in his world and more frustrated than I ever knew and this was going on since he was a teen. He didn't even know how to express all the frustration he felt inside. He had the words in his head but when he opens his mouth they just don't come out in a way that expresses what he feels. He says things in a twisted way and it hurts me and then I start yelling and he feels shut down because he can't say it properly. I was trying to hold him to an adult standard and the truth is - in some ways he IS an adult but in many ways he is underdeveloped. This makes him frustrated because he doesn't want to be underdeveloped but he can't get past being misunderstood long enough to get any help. After some time of creating environments where he could express certain things (I have to ask a lot of questions without any anger and be extremely patient) he told me that it hurts him deeply when we are not in fellowship. It hurts him because he misses me and sees all my need and wants to be the man I need and it tears him apart that he's not. He tries so hard but he constantly fails and the failure feeds on failure and there's no end to the cycle. The more I get angry, the worse he feels and shuts downs. He felt it was "futile" to try.
So, we had to work on some really honest truths about us and about what we could accomplish and what we needed to "die" to. We had to die to many things and grieve them. I had to let the husband I created die so that "R" could live. And then I had to learn how to love "R" as he is and I'm still working on that. And THEN, I had to and have to get very humbled and listen all the time to God to tell me how to help "R". This is the hardest because this means maybe we live in poverty for a long time until he learns by trust and actions how to better provide for his family. I had to die to going out to nice places, dinners, movies, parties, friendships that we would share together. But AFTER the dying - the grieving so many, many things, comes the birth and the new life.
Today, I have learned how to find my joy in exactly what exists. No more fantasies about "one day". When I was able to finally get past grieving. I saw how wonderful what we had already was. It doesn't look like anybody else's life. People can't make sense of us. But we are a family of people who try to please God and love others. We are law keepers. I even have been going through every single room and box in the house and in our yard and changed how we live. I have gotten rid of a lot of clutter and changed the textile colors and the way rooms are organized to help us all. We decluttered BIG time! We eat differently. I am changing eating habits, sleep habits, even clothing issues. We changed our work situation. Every day is hard enough dealing with the issues of 3 people on the spectrum. We had to find our own kind of happiness and peace. I sometimes go back to grieving something, but it doesn't last long because I've learned not to focus on what isn't but to focus on what is. Honestly, when I look around me now at everyone else, I see more misery outside of my family than I see inside. "R" is doing way better! I'm still learning how to listen. "R" comes home and smiles now because he loves being here. We still have our tough times. Oh- and by the way, he is WAY more responsible now. Being listened to and accepted for who he is has made him "feel" his need to be responsible and attentive to his family. I found that I was applying "neuro typical" expectations on "R" that he just didn't understand. Life had to become logical to him for him to get it. As long as he felt unacceptable and could never accomplish what was given him - he couldn't connect to us. To me, I thought the list was really simple, like "when you come in, please put your things in your own closet, neatly." It doesn't work like this. He would come home confused from the day and walk into a house he didn't understand and then go to his closet that made no sense to him and plop things down. Cleaning a kitchen meant "do some dishes". Directions help, but it all takes time. I had to pick what was important, work on that and then move on.
I feel with all these words above this sentence, I may just be sounding like scrambled eggs. It feels like scrambled eggs when you're in it, but there really is hope. I had to learn to stop looking at his life my way. His life in his "brain" as he calls it, doesn't look like anybody's life. And I can see now that he does love us and always did. He was "lost". He still feels "lost" somewhat, but he is a valuable person. I believe God called me to help this person find his way to the surface so he can be a light to this world. One day, when I really got this, I woke up and my mind was completely blown! THAT was my life's purpose! To help "R"!!!!!!!!!! And then to help "J", my son!!!!!! Oh my gosh!!!!!!!! I was so excited! It became a mission with real purpose! I am very project oriented and I don't mean to make my husband sound like a project. It wasn't that. It was my "job" to find out who he was and to help him get to where he needed to go. I felt so IMPORTANT at that point! Then, as I learned more and more, then God started putting me back in the circle of young men who suffer with the same issues. They were telling me the same things and now that I was beginning to understand, I was able to sympathize and help them to some point. So with God's leading, I started a support group. NO - I don't have all the answers! Absolutely not! In fact, it freaks me out a lot that I'm doing this - but I'm doing it for "j" and for "R" who are both benefiting. I almost bounce out of bed each day now. I don't focus on what is going wrong as much as I focus on what we will accomplish today.
The only way I know how to do this successfully is with God. I can't imagine it any other way. I would have never found my way. I would still be lost.
This journey is the most meaningful thing I have ever done, above being a successful professional, above anything else - I feel needed, valued, important. I never, ever look to my husband or son for my value any longer. (Oh what a disaster that has been!) I ONLY look to God! He shows me my purpose in this and my worth. He is my hope. He keeps me going.