hard post

Discussion in 'General Parenting' started by isabel, Feb 5, 2007.

  1. isabel

    isabel New Member

    difficult child had more psychiatric testing done at the Residential Treatment Center (RTC) last month. I attended a meeting last week in which the results were provided to me. difficult child has been placed on the schizophrenic spectrum. It was emphasized that while difficult child does not present classic schizophrenic symptoms and the mood issues are a major factor, the testing indicates that, as it was put, he shows more perception distortion and reality that is typical of bipolar. It also says there are suggestions of fragmented identity or identity multiples. Severe depression. Indications that regression into a flagrantly psychotic state is an ever rpresent possibility. He sees himself as damaged. Sees the world as a demanding, unrewarding and threatening place.

    Residential Treatment Center (RTC) team expressed their observations of his thought disorders and major difficulty in thought process, as well as the instances of bizarre things that he says -- mostly fantasy related. They were very supportive. They are also being cautious. They added rule out Psychotic Disorder to his list. They are not looking for a schizophrenic diagnosis -- if anything, they believe it would be schizoaffective.

    It is not the first time this has been suggested as a possibility or concern, but it's the first time any testing has supported that possibility or concern. Before, the suggestions were based on behavioral ancedotes and reports from us to docs of things he's said/thought.

    And I thought the possibility of bi-polar was devestating. I still remember the emotions when at age 4, we were told he had ODD.

    I have been struggling -- agonizing -- since that meeting over what I did to cause this. I realize, really, please believe me, that this is stupid. And counterproductive. And stupid. But I couldn't/can't stop it. I've even come up with a list of risk criteria, based on a little reading that I did, that combined, could have done this to my son -- stress during pregnancy, pre-eclamsia, putting him in that horrible hospital when he was 5, even though I didn't know it was horrible at the time. Something maybe that I haven't even come up with yet, that, in concert with other things, triggered his risk factor. Completely pointless, I know, but I regressed to this point. There is no schizophrenia in either of our family history that I know of. Where did this come from? This guilt is not as intense as the first few days, but I don't know if I can get past it. Maybe it's my way of not completely losing it and screaming at the world for being so unfair. Which would get me the same results as far as finding an answer as to why -- a big fat 0; only they'd probably put me in for some testing of my own.

    Back to what I can do and control, something I should have done long ago -- put in writing and legalize a guardianship for him should something happen to me and husband. We have an understanding with husband's parents, but I want it official. I can't get past the thought of who is going to take care of him, love him, if I'm gone. I need that piece of mind. I can't explain the sense of urgency borne out of this testing that has taken over me -- why it seems so much more important (and it was important before) when we were operating on the idea that this was a case of bi-polar with infrequent bouts of delusions. Except to say that his future and ability to have happiness in his life seems much narrower now. Maybe it is the shock of seeing it on paper. The last thing I've ever wanted for my son is a limit on his possibilities...it seems that we just have to work a little harder for him to realize what he so wants -- a normal life.
  2. Lori4ever

    Lori4ever New Member

    I understand why this is hard for you. I also understand why you need the peace of mind of knowing that your child be cared for when you're gone, or not in a position to do this. But please understand that nothing you did or didn't do has caused this. It was just in the cards, and not something we can control. I am so sorry you are going through this.
  3. Fran

    Fran Former Site Owner

    Isabel, your little guy has been so complex. It's a wonder he gets through the day. Or you.
    I don't think there will ever be a day when you won't wonder what if.....
    I certainly understand the need to make sure he is taken care of. It's something you can do to protect him in a condition where there is little or nothing you can do to cure him.
    I did the same thing. You have to do something that is motherly, maternal. It's crossing the t's and dotting the i's.
    The rage at the fates that would bring this on an innocent child is something I keep locked up. It's an ugly pain. Go ahead and rage for a while.
    I know there isn't much that will make this better and I know you know it's just a label but I also know you see the behavior that has been the reason for the label. Try to remember that he is going to have better days and treatment will improve. Try to think of the folks who manage within their disorder. I hope he learns the skills needed to control his rage. He can still have a life.

    Many gentle hugs. None of us expected perfection for our children but we expected for them to have a chance at a decent life.
  4. timer lady

    timer lady Queen of Hearts


    I can understand your emotions over this post. You are still the same person. difficult child is still the same difficult child. However, you have a different direction - a different treatment plan which may prove to be more successful for him.

    As Fran stated, your difficult child has always been so complex. You continue to love him - you continue to advocate for him. It's another piece of the puzzle that makes up difficult child. (I don't mean to sound simplistic - not my intent. I have many of the same feelings about wm. My mother's heart is breaking with yours tonight.)

    Sending you very gentle hugs tonight.
  5. Suz

    Suz (the future) MRS. GERE

    I am so sorry. I don't care how much we prepare ourselves or brace ourselves for possible bad news, it is still devastating. I can only suggest that you give yourself time to absorb this news, grieve, and gain some perspective again. I'm glad you are doing something pro-active with the guardianship issue if it will help give you some peace.

    Your son is 11. We can hope that there will be successful and reliable treatment in his lifetime. I'm just so sorry for your heartache in the interim, Isabel.

    Many hugs,
  6. TerryJ2

    TerryJ2 Well-Known Member

    Oh, Isabel, I am so sorry.
    IF (and it's still an "if" right?) he's schizophrenic, it's not something you did during pregnancy, from what I understand. It's a trait (or perhaps gene) that goes deeper than just one pregnancy. Even though you have no family history of it, you don't know if anyone in the past isn't spoken of (we have a couple of people I found out about after I was married!).

    I beat myself up all the time for things I did or may have done when my difficult child was younger. I was an idiot. Who knows when Tough Love is right or when understanding and patience, and ignoring the tantrum are the right thing to do?
    But two things I did were to apologize and tell him I loved him (after a screaming match), and keep trying. (Obviously, or I wouldn't be on this bb.)

    No matter what, it's clear that you love him. I hope he knows that. I wish I had a magic wand to wave over all of you.

    And I know you want to protect him after you're gone. It's a form of self preservation, in a sense, you know?

    Allow yourself to worry and fret for a day or two. It's a form of loss. It's legitimate.
    Then make it a point to move on. Easier said than done, I know.
  7. Marguerite

    Marguerite Active Member

    Isabel, it's not your fault. Tattoo it on your forehead in letters of fire. You're fretting about "stress during pregnancy, pre-eclamsia" - there are many babies born after such stress factors, who are NOT like your difficult child. YOU DID NOT DO THIS. All that you HAVE done, is love your child and try to help him. Would he be where he is now, getting a diagnosis and some intervention, if you hadn't done your best?

    Blame and guilt will slow down your effectiveness and achieve absolutely nothing. It's natural for us to do this because sometimes we can find a clue that can help - but not in this case. Recognise that your guilt is coming from a desperation for things to be normal, and that isn't going to happen. But you have already come a long way down the path to helping your son. I looked to see how old he is - I was surprised at the answers you've got, when he's not even in his teens yet. You have done wonders.

    He's not perfect - that's not your fault. It's not his, either. It's just one of those things. All you can do is hold on for the ride, from here.

    We're here holding on with you.

  8. rejectedmom

    rejectedmom New Member

    It is so hard to have to adjust to so many different diagnosis's. We greive with each new one. It is not fair, not for our difficult children, not for us the parents, not for other family members. Like Fran I rage silently within because it sometimes gets so big that if I let it out I its magnitude will stun those that love me or come in contact with me. So I try to harness it and turn the anger to good. Your idea to set up guardianship and address other legal issues is one way of doing that. I use the energy to work on the house or write letters to legislators about mental health issues. And I meditate. It helps alot. (((HUGS))) -RM
  9. dreamer

    dreamer New Member

    My husband carried a schizoaffective diagnosis years after a bipolar diagnosis.....to go with his combat PTSD diagnosis......
    Yeah, it's hard........
    My son did not get his cerebal palsy diagnosis till he was 9.......nor his seizure one......
    What everyone is saying is true......the person is still the same person, but now you have a starting point to work with.

    BUT......be gentle with yoursef. Understand that when you get news that hurts as this might hurt for you-----especially regarding your child- you WILL be going thru the stages of grief.......denial, bargaining, anger etc.......eventually you will go thru them all.......and sometiemes yuou will revisit them.......it is normal to do so. Don't let guilt eat you-----don't let it grow------It is not like this diagnosis was growing off a tree and you plucked it and hit your child in the head with it.

    My hugs to you......I know it must be so hard.......please be gentle with yourself........
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm sorry-I wish I knew what words to say. I know you know it's not anything you did so be gentle with yourself. You are a tremendous advocate for your difficult child. Sending gentle hugs your way.
  11. Hound dog

    Hound dog Nana's are Beautiful

    It seems even when we know it in our gut, to see it down on paper or to have a professional say it somehow still manages to knock us off our feet. The guilt is normal even when we know in our brain that it is unfounded. Just keep right on reminding yourself that this is not your fault.

    Genetic data is difficult to know. Somethings skip generations. And dxing these types of disorders in the past wasn't so accurate or common. My mother has this disorder. Her sister and father had this disorder. We keep a close eye on family members for this disorder knowing it can rear it's ugly head again further down the road.

    If it's there, then it's there. This is still the son you love. Nothing will change that. Hopefully this new testing will help gear the treatment to better suit his needs.

  12. kris

    kris New Member

    <font color="green">izzie, i know that you know that this is chemical & genetic at it's base & not something you did. self~blame is part of your process & something you will sort through as time passes.

    seeing it writing & having it *suggested* as a possibility are two very different things. the suggestion you can tuck away....the seeing gives it a solid reality.

    try to remember that there are new medications being developed as we speak. places like the NIH are constantly doing excellent studies. all of that is down the road, but again...tuck it away in your head.

    take solice in the fact that he is in a safe place....a place he does seem to be benefitting in. try really hard to stay in the here & now.

    know you guys are never far from my heart.

    kris :smile: :smile: :smile: :smile: :smile: :smile: </font>
  13. jodyice

    jodyice New Member

    ~sending huge hugs to you~
    It's easy to blame ourselves when something like this happens, but you have to know hon, that nothing you did could had prevented it, it's not your fault. Now say that over and over again, "It's not my fault, it's not my fault."
    He is your son, as each of our difficult child's our own children, we love them, we try to get the best help they need, we struggle, we cry, we vent, we lean on each other.
    I'm sorry for everything you're going through, but I hope with the new diagnosis being down on paper, that the road ahead will be easier to travel. You're in my thoughts and prayers.
  14. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    What a hard post to read. The diagnosis doesn't mean an end.

    Your instinct to protect your son, should something happen to you husband, is normal. Your feelings of guilt are normal. Looking for reasons is normal.

    You have loved and fought as hard as anyone. You will continue to do so. That is why you are who you are.

    The dxs and the paper are just words. Your son is still your son.

    I send you all the support possible and many, many prayers. Please continue posting your feelings and difficult child updates. Don't go away for long. Stay here with us so we can help you go forward from here.


  15. smallworld

    smallworld Moderator

    Isabel, I'm so sorry. I can only imagine how hard this news is for your mommy heart to bear. Please be kind to yourself -- you are doing everything in your power to help your son. Sending many prayers and gentle hugs your way.

    TYLERFAN New Member


    I just wanted to tell you that NOTHING you did caused this.
    I am so very sorry. Is this the only doctor who gave this diagnosis? Have you or are you intending on getting a second opinion?
    The fact that this horrible scenario has put you in a mode that is now making you think about his overall care for life....is one good thing. At least you will know your wishes will be carried out.
    I know how you must be hurting. Hugs and Prayers.

    Melissa *
  17. Coookie

    Coookie Active Member


    I have not words just sending hugs. :frown:
  18. Sheila

    Sheila Moderator

    Sending a big hug.
  19. SearchingForRainbows

    SearchingForRainbows Active Member


    I'm so sorry you are going through this!!! It is so overwhelming when we get more bad news about our kids... I think it's especially difficult because we can't "fix" them. I think you hit the nail on the head - You can take positive steps to help your difficult child. As you said, you can control who his guardians will be as well as the treatment choices to help your difficult child lead a fulfilling, productive and happy life.

    The love you have for difficult child comes through in your post. You are an excellent:warrior:!!! I know, you know, that none of this is your fault. I also know how hard it is to hear such devestating(SPELLING?) things about our children. I think it just takes time... You have to let everything that was said really sink in...

    We're here for you as you continue to deal with the hurdles difficult child must face... I know you will give your difficult child everything you possibly can to make the road ahead easier for him... Hang in there. Please take care of yourself. Hugs, WFEN
  20. Ephchap

    Ephchap Active Member


    Holding your hand cyberly, to help get through this latest. You've certainly been through more than your share, as has difficult child. No, it's nothing you did, but I know you know that. It's a process we all go through, I think. It's called the woulda coulda shoulda phase.

    As others have stated above, this latest doesn't change who your son is, and I know you know that too. I too could cry at the injustice of it though.

    Wishing there was some magic answer, Iz. Holding you and difficult child in my continued thoughts and prayers.

    Sending gentle hugs,