No improvement...

Discussion in 'Failure to Thrive' started by AnnieO, Mar 4, 2016.

  1. InsaneCdn

    InsaneCdn Well-Known Member

    His grades go up. Inside - due to his own thoughts, not due to outside influences - his anxiety goes up, because if he can get good grades, then there's lots of other things he can do, except... he doesn't believe he can. So subconsciously, he self-sabotages. What lies beyond graduation is too scary to contemplate, so "shut down", stay where you are, where it is safe. Do whatever it takes to feel in control. It's not an uncommon thinking pattern related to a number of different challenges - anxiety, depression, and Asperger's are just three examples. Some forms of attachment challenges would also generate that kind of thinking.

    It's the thinking that has to change. But even that is scary.
    When you have had a more normal life, there is some level of trust in other people, some level of trust in life "unfolding as it should" (even when it's not really what we asked for or wanted). If you don't really trust anything or anyone... life is VERY scary.
  2. I have been thinking about your situation all through the evening and morning. I forget who said it yesterday on this forum, but something was said about our kids not just having behavioral issues but that there is something really not right in there understanding because of how they are made. I am completely convinced that my son has issues with reasoning certain things. In some ways he's like a genius. He has basic very good common sense. He also has the ability to discern people fairly well. But there is a certain area in his understanding that just can't process or make good sense of how to respond to certain situations. When he was growing up, I would get so angry with him! I would take extreme measures with him to try to discipline this behavior. For example, there was a stretch where I actually took away his toys for 6 months. We couldn't find a way to discipline this boy that would work. If we took things away, it didn't work. If we provided awards or rewards I should say, it didn't work. When I took the toys away for 6 months, which I know is completely off the charts extreme, it didn't work at all! (At the time, I didn't know he had Aspergers.) He just went into his own imagination and used sticks, boxes all kinds of things to make new toys. At first, I thought maybe he was a sociopath. When we had him tested about 3 years ago, the psychologist said he had a social disorder. She said if she gave us a diagnosis, he would have trouble getting a job. She suggested not letting her give me an official diagnosis, and wouldn't even tell me what the name of it was, because her son has the same diagnosis. In his case, he is not able to keep employment because that diagnosis is on his record. She totally misdiagnosed my son by not recognizing the Asperger's Syndrome which we had tested through the special education department in the school system for free even though we were homeschoolers. They gave him an 85% on Aspergers, ADHD and other things.

    I seriously see in him that he really just doesn't get some things and I spent years and years being angry at things he's unaware of and so doesn't have control. What is so frustrating, is it LOOKS, SOUNDS, and FEELS like he is being obstinate, defiant, rude, disrespectful, etc., but as much as it can make me crazy, it frustrates him more. There is a maturity that I'm only getting glimpses of in this gray area for him and I wonder if this is the area that is developing the slowest for him in his brain. I can't give up hope. If I do, it's like giving up on him. I'm really all he has and I've lived through it 57 years in my own life. The hardest thing I've had to do is such up my attitude and prayerfully consider how to actually help him. I have to look deeper and ask better questions. I don't know that we'll ever have an accurate diagnosis, we just take one day at a time.
  3. I meant to say, "sick up" my attitude.
  4. AnnieO

    AnnieO Shooting from the Hip

    GG1958, I really appreciate your point of view!

    The problem as I see it is... This is totally different from all the other issues we have had in the past. There are a LOT of accomodations we have made - for instance, on the chore list it doesn't say "clean the bathroom". It has that, and then numbered steps below. 1. scrub toilet 2. wipe outside of tank and bowl if needed 3. wipe out sink 4. wipe off counters 5. clean mirror 2x a month 6. rinse/scrub tub 6. sweep floor 7. mop floor... It's literally spelled out. Each chore is like this. Whenever we ask him to do something, we write down steps, or just ask one-step things at a time. We've tried advocating with the school, and he is included in IEP meetings, but he won't advocate for himself - which is the day to day. We've gotten calls from the school when things happen... He used to complain to us that people didn't like him, but nothing specific and no one specific, and when he was bullied he would not tell anyone WHO was doing the bullying. The one time he told us and we got back with the school, he came home with a black eye and threats.

    I've asked, Bill has asked, Belle has asked... WHAT can we do to help? TELL us what is going on, what you're thinking, we can brainstorm together. Nope. Used to be, if you asked him to help he was all over it. Suddenly, he was uninterested in helping anymore. I swear, the red flags for substance abuse are there but I would bet my pay that's not it.
  5. InsaneCdn

    InsaneCdn Well-Known Member

    I agree, it doesn't quite sound like substance abuse. Even though parts of it sort of sound like it, other parts don't.

    If these are new symptoms, there is a chance of mental illness (i.e. beyond anxiety and depression) - because some of these show up between puberty and age 25 or so.

    Sorry to bring this one up, but it could also be a brain tumor. I have seen it happen in adults (40s, 50s) where the presence of a very small tumor significantly changes personality and/or behavior.
  6. InsaneCdn

    InsaneCdn Well-Known Member

    This part, I totally get. My kids were there. Son learned to NOT speak up. Day came when he GREW - like, oversize, not obese. To the point that the bullies basically decided to pick on someone their own size. But even then - he wouldn't tell us who "they" were after the fact, not even years later.
  7. Annie, your situation sounds very complicated! I'm truly sorry you're going through this.
  8. I know this won't apply to your situation at all, but I just thought I'd mention because you talked about substance abuse. My husband, who has Aspergers, turned to substance abuse at 17. He just wanted to "feel" anything. He was not afraid of being caught as much as he wanted to feel. He had no sense of self-care or being able to understand consequences. He made terrible mistakes in his young life because he just had no sense that certain things were important. His apartment, his hygiene, his living arrangements were all atrocious. We grew up across the street from each other. He grew up in a very organized, clean home. When he was about 38 our 40 (after many painful years of marriage), one day, he actually experienced his first authentic feeling. He was so overwhelmed! He came to me in tears (tears had never occurred.) He was experiencing true joy. This is just a mention. Up until about 12, he was a happy kid (a similar thing happened to my son.) It's only now at 56, he is coming to realize certain things are important. He is a dear person. I was very blind as a young woman. I stayed because GH od had called me to this marriage I believe. He was always very secretive. He never self-advocated. Still doesn't. People have walked all over him bullying him to this day.
  9. AnnieO

    AnnieO Shooting from the Hip

    You just described Pat exactly. However, we can't let him walk all over US... Sigh.
  10. InsaneCdn

    InsaneCdn Well-Known Member

    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.
  11. This has been my marriage for 32 years. I have always thought I need to write a book "Raising My Husband". I lived frustrated until I burned out. Then, on my death bed, God
    Great reply! I'm right there with you! But I do have some big answers now - just hoping for the son.
  12. 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.
  13. InsaneCdn

    InsaneCdn Well-Known Member

    The word "retard" comes from French, and means "to slow down". Aspies ARE "slow" when it comes to emotions and social skills. By definition, it's part of the syndrome. But it isn't a pervasive retardation - it's specific. Most are actually really smart in other areas. But neurotypicals don't see it because social and emotional skills are at the top of THEIR list.

    Expectations. The killer for Aspies - and for anyone who loves them. Yes.
    At the same time, we have to have a life, too - we can't just have them doing "anything they want".
    For our family, getting Aspies involved in healthy "normal" activities that they loved, turned these into obsessions... but obsessions that the rest of the world can enter in to and support, too.

    The challenge with Pat is that he isn't open to ANY of these activities. He has shut down enough that he shuns all alternatives. But... we don't actually know that Pat is an Aspie. (In my opinion, he has some traits - but there are other good working hypotheses too.) Challenging as Asperger's is, if Pat is actually more Fetal Alcohol Effects (FAE), then even the things that work for Aspies won't work well for Pat. It's a different twist on different thinking.

    Even with Fetal Alcohol Effects (FAE), though, it's more "shut down" and inappropriate coping skills, than it is deliberate action. But how to get a Fetal Alcohol Effects (FAE) brain to respond to something, anything, that will be a step out of this pit.
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  14. You are right about Fetal Alcohol Effects. So painful to those who love these folks and don't know how to reach into that person and help them.
  15. AnnieO

    AnnieO Shooting from the Hip

    We have tried and tried to get Pat into ANYTHING other than video games. Video games have their place, but when they are the be all and end all to the detriment of everything else, including nutrition, hygiene, and ANY true social interaction, they're not a reasonable activity.

    We tried... bowling, since he seemed to like it (too expensive to do very often), model building (no interest), puzzles (no interest), cars (no interest), radio control cars (no interest), bike riding (little interest), music (no interest), sports (softball was good but as he got older fewer teams available and when they have 90-minute games at 9 PM on a weeknight when you have an infant... uggghhh), cooking (some interest but wouldn't stay to learn if it took more than 5 minutes tops), even playing his video games with him (DISASTER).

    I always played by myself, as an only child with few friends and no close cousins. Then I got into reading. I loved reading the way he does video games. But... I also wanted to live up to my parents' expectations and was a people-pleaser. Less so, now, but still some. I'm still an introvert - text, email, facebook me and I'm good, call me or do the in person thing and... Uggghhh. It's hard for me to be "ON" all the time. So I do understand not wanting to be around a lot of people all the time... But a few would be good for him. He just "stalks" them and they run the other way.
  16. InsaneCdn

    InsaneCdn Well-Known Member

    Yes Annie. I remember you trying. And trying and trying and trying.

    Pat is a true example of our complex kids. They don't fit ANY rational or pre-existing "box". They are uniquely unique. And it's worse when there is a combination of different types of challenges. It's like trying to find the "missing" end of the yarn on a tangled ball. There is lots of yarn, and many knots, and no good place to start to untangle it all.
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  17. I hope that you are able to figure Pat out. Pat will be one out of too many in the future. There already overweight 2 year olds raised by their parents with help from Tablet-nanny. They are not good socially but good at turning on the Tablet and find the cartoons even before they master full speech.

    I am not blaming the parents because they really do everything out of the best intention. I am not happy with teenagers focusing on social media - FB, Twitter, Steam etc. instead of personal relationships. We cannot even use our own experience because there were no such things when we were children. What if we had the option to avoid personal contact when we felt insecure, not-belonging wearing the wrong clothes and make-up? We all felt like this at some point in our childhood but we had to overcome it because there were no way around. Now there is and we cannot remove them and undo evolution.

    I really wish that I had some kind of advice but I don't. I wil resort to pray instead.
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  18. ForeverSpring

    ForeverSpring Well-Known Member

    He sounds very much like he could be on the spectrum. Limited interests, and many times they are videogames and/or movies, are big symptoms as is preferring to be alone rather than with peers. It is all just part of the spectrum, if he is on it. Sometimes spectrum kids have a useful obsession, such as electronics and taking apart things and putting them back together again, and more often it is videogames and television since they lack imagination and need outside stimuli to amuse themselves. My son watches the same movies over and over again. He has memorized them. He seems to like this sameness. I do too. I am mildly on the spectrum and have a severe non verbal learning disability, which is spectrum behavior as well. New diagnosis. for me. They didn't have them when I was young.

    Oh, yes, my son!

    My son who is on the spectrum is a videogame/movie freak (so stereotyical) yet he has a job and is doing well, albeit with minimal supports from outside. I accept his disorder because he can't help it and he is very happy and not at all rebellious. Everyone loves him. He is who he is.

    I have no idea if this is Pat's problem. If it is, don't expect him to dive into a lot of interests, have a lot of friends (he will prefer to be alone probably) or, if he feels stress, substance abuse is common. And spectrum kids experience far more stress from far more issues than neuro-typical young adults and children. I know. I am close to being on the spectrum myself and have my own obsessions and it's a miracle I haven't abused drugs. Along with this, comes very common co-morbids such as depression, rebellion to authority (they don't get how social rules) and phobias, generalized anxiety disorder, and panic disorder.

    If he is on the spectrum, and again I don't know if he is, he would have needed early intervention to be able to be at his best, although some Aspies learn to do it better on their own (some can't). He can still get interventions. Something about him screams to me that he is not neurotypical and is not going to adapt to your standards as to what is important through no fault of his own. Does he also have alcohol affects? That makes it even worse. My son Sonic was tested positive for crack as an infant. Obviously, heh, if his birthmother didn't say "no" to crack, she did not say "no, sorry, can't have a drink. I'm pregnant!" It is not my son's fault that his birthmother abused drugs and alcohol and made him ingest these things while he was trying to safely grow in her womb. If this applies to Pat, it is not his fault either. And,yes, it makes them different and we need to accept them as they were born. We didn't cause it, but we are raising them and want them to feel good about who they are.

    I deeply apologize if I'm off base here. You know I think you are a great mother. Many people are great parents to neurotypicals, but are puzzled and put off by those children we either adopt or become steps to when they are not like we are. Sometimes the changed thinking has to come from us. Again, apologize profusely if I am out of line. These are just my thoughts and you may disregard them all, if they don't fit. "If it doesn't fit, you must acquit!" (Johnny Cochran) ;)
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  19. You're tellung my story of me and of my son. I was right where you are when my son was 18.