kind of sort of related to post on general forum

Discussion in 'The Watercooler' started by dreamer, Dec 10, 2008.

  1. dreamer

    dreamer New Member

    THere is a post asking how the mods and their kids are doing.
    It made me realize, - altho I am not a moderator here and never have been....I HAVE been here a long time, - my sig says I joined sometimee, but that sig date for me joining is wrong.....I was here before that.
    BUT by the time I arrived to this board, I was worn out, and things with my difficult child were already starting to become old news for me.
    I have not ever posted much about my own difficult child partly becuz of her age by the time I got here.and partly becuz of how things went for us.....and partly becuz I noticed early on most people who were already here felt I was not doing things the way THEY would.... and they made sure to let me know.

    Yes, my difficult child did drugs, was promiscuous, stayed out days and nites on end.....Yes we had a LOT of school problems with her and our school, altho I was there at her school trying to be a part of the "team" and we were VERY involved with WRAP around services, SASS services, mentors, Big Sisters, in home tdocs, in home behavior mod docs, and in home respite and PCAs for close to 10 years. My difficult child was in psychiatric hospital, but never was approved for day treatment programs etc.
    Yes, MY difficult child trialed so many many medications over the years, she was in so many research studies and trials etc. I was at one time very active in addition to living with not just difficult child but also my severely mentally ill husband and bipolar myself, and also haveing a special needs son AND being the sole financial support here.I was still active in advocateing on a town, county and state level here, working to bring more and better programs for difficult children to our area. Looking back, I still do not know how I found the time, except that I do remember saying back then that I had to make the time becuz we needed those services. Alas, so few of those things I worked so hard to bring here ever benefitted us personally. ANd the early experiences of the early days of many of those programs was less than good.

    In the end, for us personally.....we had such negative experiences coming from the very places and services that were supposed to help------I look back and think, oh my gosh, my difficult child herself was a cakewalk to deal with compared to the services that were supposed to help us. And we do not have medications on board here, now either, for similar reasons. difficult child was on ritalin back in 1990. by 92 she was on ADs....when we complained she became suicidal so young, we found DCFS at our door..with them saying ---lots of weird things-such as we could not be giving her her prozac, zoloft, wellbutrin, etc etc cuz if we WERE she would NOT be suicidal. or um.....what kind of horrid monsters were we as parents to have such a young child wish to be dead?
    In order to even get difficult child evaluated, me and husband had to submit to psychiatric testing, which was OK by me, cuz I had been trying to no avail to get husband evaluated for a few years already.....and even then, before they would evaluation difficult child they said no child could possiby behave how I said she was......I must be too high strung, and I had to first trial medications for x weeks before they would evaluation my child. sadly those medications triggered me and set of a cascade of events that cost us thousands in my lost income, they triggered severe mania.....and robbed me of a couple years of my life. Triggering the mania by medications was easy enough.....calming it back down? not so easy.

    Yes, these days I have a 20 yr old difficult child daughter. She has not been in public school for several years due to major difficulties with IEP process and due process proceedings etc. Several of the school staff deliberately triggered her on purpose for their own agenda.....and it created an ugly PTSD in her. My once drugging difficult child now NEVER leaves the house without me, and if we do go out, I must stay right next to her the entire time. medication free now maybe 4-5 years...she sleeps 18-20 hours most days......she had ranked in 98th percentile in ALLL academic subjects from kgarten all the way to grade she can barely read at all, her psychiatrist thinks some of the medications caused some damage, she can barely add, cannot multiply.....
    SHe IS polite, kind, compassionate, careing....she is also painfully shy, will harm herself before hurting anyones feelings......
    Nope, cannot find services to transition her.....she is not mentally retarded, and she is not a violent or aggressive mentally ill person......
    Her brother has entirely different diagnosis'es, needs etc.
    He never scored quite as high as her....BUT mostly he is dyslexic......when you take out the demand to read..he scores 99th percentile and has genious IQ in spelling (orally) math and sciences.
    Prior to seroquel my difficult child was very athletic.....but seroquel changed her body, and she is now very overweight, sluggish and has very high blood pressure and insulin resistance. My son has NEVER been at all athletic, or coordinated. He is 13 and still cannot tie shoes, could not ride a bike despite our best efforts until he was 11.

    I have often said my own mobility deficits when I was at height of my autoimmune illness changed ME and how I look at my kids and husband. Also while I was most ill, I lost so many of my most precious persons.......(they died) and that changed me, too.

    So, most of the time, now, I look at my oldest child, my difficult child and I simply see a loveing kid who will never be able to move on in life very far.....and I worry...but I just love her anyway just the way she is. Fate tossed me a joke and made my easy child become a young mother, and made easy child so sick with this pregnancy, that even tho SHE was The One on her way up up up with full academic scholarship at private university.....BUT see, fate threw that at US and we laughed in fates face becuz see, we LOVE babies......and we adjusted to the whole idea very quickly. easy child is aceing her classes now at community college.....and it is bringing difficult child out of her shell some......

    and my son is benefitting haveing this extra time with easy child and PCs boyfriend is around now a LOT......and son is benefitting from haveing PCs boyfriend around.......

    So-----we are all continueing to grow, learn, etc. OK yes, we do have some wild moments, sometimes quite wild indeed.becuz yes, 4 of the 5 of us ARE diagnosis'ed with srious mental illnesses, 3 of us with bipolar first off.......and also 2 with PTSD with psychosis.
    BUT over the years, this has just kind of become our norm. We have learned resilience, flexibility, acceptance, tolerance.....and forgiveness.

    I am certain easy child at one time could not wait to be old enough to get away from here.......LOL....but....once she began to venture out of here.......she began to see that even tho we all have these diagnosis'es? The world is FULL of people with diagnosis'es out there, too----and it is also full of people who should carry a diagnosis but just have ntot yet been evaled? LOL, I think she decided she prefers the familiar to the unknown for now?

    Yes, tonite, I made crusts for us to have a little pizza makeing party for dinner. easy child and her boyfriend were both here.....(he did not have to work tonite) All was going as well as can be expected......and then it was not difficult child, it was not son, it was not the pregnancy was husband.....he went off, becuz easy child said dad, can you please wipe the sauce off your face? and he broke the kitchen faucet.
    Becuz HE had a meltdown.


    Yes, I do not post often.....becuz see, I am not calling his psychiatrist or therapist over it. I am not holding him accountable...he is 60 and has psychosis, schizoaffective disorder, Alzheimers, brain cancer....been there done that.......we simply stepped aside.....years of experience, we knew, leave him alone, it lasts maybe 30 seconds.......and then he sits down and shuts up till tomorrow afterwards. Money to pay for sink? We have been married over 20 years.we are both on social scurity disability, it is a community financial pool, mine and his....repairs iwll simply come from OUR collective pocket. Who will have to call or make arrangements for repair? Me, becuz he is far far too ill to do so. HE has not been able to talk to anyone except his docs or me and the kids in almost 2 decades.

    THats just our life, it was nothing extraordinary anymore. SO I seldom post cuz it is just same old same old, and has been now for almost 20 years. BY now, for us, it is unremarkable.

    DOnt get me wrong, every single day I DO work at trying to teach difficult child and son academics and daily living skills. difficult child can now pay our bills, shop for us (except she cannot drive) plan our meals.....organize our calender......Son can make meals, do laundry, balance checkbook, he can also now pay our bills, he can plan a great and nutrituos menu and look up recipes and make them great. difficult child is perfectly skilled to be a nurses aide, IF she could leave the house......and she has done personal care attendance for close family members. Yes daialy me and easy child work between the 2 of us many many hours daily also doing academics, science fair projects, math work, easy child has difficult child and son sit with her and they all do the work easy child does at college...she patiently guides them to learn it with her. And I drag difficult child and son with me nearly everywhere I go in the normal course of running a home etc.

    Personally, I would some days LIKE to have a little more alone time, a little more "me" time, altho, my friends have all passed away......and my DHs family was gone long ago.and I have been estranged from MY family for years partly due to how much I had to work, and how sick I was and thus unable to go TO my family, and partly becuz they wanted me to leave my husband years ago when he first got sick.-- and the needs of my family are so great, "me" time is so hard to find. So, I just sing loud and off key all day while I play with my growing kids, I do silly things, cuz I haeve always liked to be silly....and for the most part, we have all sort of just settled in to this crazy hard life.
    But I hardly ever post anymore about "us" Becuz it is just so much same old same old, and we are now just settled in, and this is just life to us, now? It is what it is......very little is gonna change very much. I just now smush my giggles and fun in in between everything when I can. and boy do I! LOL.
    And I seldom look back on our past, becuz....well....we did the best we could with the knowledge we had and the resources available to us at THAT time. We did so with love in our heart, and hope and good intentions. Science was not yet ready for kids like our difficult child......and neither was our I worked hard and tried hard to bring better to our area.....that help did not get in place in time for MY kids.....but.....maybe it IS a little better for those coming up behind us. I like to hope so. Meanwhile we are gonna just continue to hang in here. I am SO grateful difficult child lived thru her drugging time.....grateful my husband has lived this long with his ilnesses, - so grateful I have mobility back again.......and I am so grateful my son keeps beating odds and keeps moving forward. Our school failed him, he was 3 full grades behind but has come so far ahead with me and easy child teaching him.......

    The tantrums and meltdowns do not get me down like they used to. I really thought all of us except easy child would be dead by now!
  2. gcvmom

    gcvmom Here we go again!

    I think after all you've been through and will continue to go through, this, above all, is what matters most! It is what we all need to survive living in families with difficult children. And in the end, it is what makes Life worth living.

    You are doing a great job!
  3. Lothlorien

    Lothlorien Active Member Staff Member

    I think we all have cycles of need....needing to be there for others or need of support from others; need to post about ourselves and the need to just be private. I notice that some people post a lot for a while and then dissappear, but when they come in and post they always say they read, but don't feel like they have all that much to offer. We give what we can and take what we need.
  4. Shari

    Shari IsItFridayYet?

    Thanks for this.

    Sometimes I get so caught up in the fight, I forget to live that which is my life.

    By the way, tho I've never met your son, he hooked me with the t-shirt at the eye-doctor. That STILL makes me laugh. What a way to roll with the punches.