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Thread: Add schizoaffective to the mix

  1. #1

    Unhappy Add schizoaffective to the mix

    It has been now about a month that Rachel went to live at a group home. Like if Autism wasn't enough, my suspisions of schizo and bi-polar were confirmed by an evaluation. Rachel is also schizoaffective.
    She continues to go down hill in the psichollogical end of things. Her rages don't make sense. Some of the things she loves the best end up broken because she looses control. She is hurting people right and left and now the new school she was placed can't handle her. Have another IEP set up to transfer her to a private school that is in a behavioral hospital, perhaps, this is the best for her.

    She is now banging her head on the wall on a regular basis and am affraid she is going to end up with brain damage, or crack her skull or just screw her head even more. She has another evaluation coming mid this month for a second opinion, but there is no doubt in my mind that this new evaluation will say the same, Rachel is schizoaffective.

    DDD placed Rachel at this group home, and I am still satisfied with the care they give her, I have no complains there whatsoever, they go above and beyond to take care of her and deal with her when she goes off. DDD placed her on a six month term at the time, them thinking that eventually Rachel might be able to come home and that we will be working on having her come home. They want me to get training so I know how to handle her, in other words, restraining her to keep her put until she is done with her fits or rage, but I have seen her been restrained for a very long time without her giving up. I did so at the hospital when they had her there and no one seem to know how to control her, I had to climb on top of her and hold her down, I was down with her for at least 30 minutes, and even after sedation medication was used with her, she was still raging. Finally, she had to be carried and restrains used to tie her to the bed to keep her there. Oh it has been fun, NOT. DDD will re-evaluate every six months, and since it's been 1 month with Zero improvements, actually the opposite, I trully doubt it if she will be able to come home after the first six months, and honestly, I do not want to learn how to handle my daughter in that way, I don't feel I should be made to do this.

    I am still looking for work, but again it is difficult when every week, once, or twice a week, there is another appointment, meeting, incident, etc etc related to her that I have to attend to, am wondering how long should I keep doing this and putting my financial situation at risk of us loosing everything including our living arrangements because I do not have a job. Can I get a job, yes I could, easily, would they allow me to go off once, twice a week to take care of an emergency, very likely that would get me dismissed in less then a month, if at all hired because I would give heads up on the matter.

    I am looking for overnight work so I can at least miss less things, but that would mean me leaving my autistic son home alone through the night, which he can handle, but there are some times he gets anxious or confused, then what? I am stuck between the point of several swords pointing at me.

    I am starting to loose my own sanity over all this, even if I am now getting better sleep, still the preasure of all this is making me spin in circles, I honestly am thinking of going on antidepresants for a while, because I get so down and I just can't seem to stop crying at times, when I least expect it, tears are running down my face, I am depressed and need help.

    I probably am just rumbling on and on and not making much sense, I just needed to get it all out.
    Hugs all

  2. #2


    You really can't leave your autistic son home alone matika, really, you can't. You need a personal care assistant, call like medicaid and tell them you CANNOT work without having HELP, get on a Med-Waiver Waiting list and see about getting services for your son because if I recall your son and daughter were quite young, like around 10 right? That's too young to be left alone, I know you need to work but you CAN get help. Please see about it. Call medicaid or look up in your area for a developmentally delayed children and adults social services from the state, they can help direct you to get the Personal Care Assistant services you really need in order to be enabled to work. I am so SORRY to hear about your daughter's condition worsening. I know things have been difficult, I remember when you were still with your ex husband. You were strong enough to get through that ordeal and you can get through this too. Hang in there matika.

  3. #3
    Community Member
    Join Date
    Oct 2006


    Sorry about whats going on Becky.. and that this forum is so dead these days that few even see posts. You know Rachal is who she is, diagnosis is secondary. A diagnosis like that is only an opinion, don't matter how many people tell you the same. So.. they are saying she is psychotic? Is she hallucianting? And isn't she still young? they don't dx that typically in children under 13. Sometimes docs add a dx so they can add a medication (anti psychotic).. is that what they are doing?

    My experience has been that kids and adults do not react like this for no reason. You may never figure out what it is, or you may. It could be something she injested/injesting (in the air) touched, felt, heard, her own respirations (has anybody checked her pulse ox during one of her fits?). Has she had a mri of the brain? Non the less, I can guarantee you that she is doing this for a reason.

    Restraints are tough. I hope you are a not restraining her face down, and not allowing any pressure on her chest because either can be lethal.

    About getting a job... you need to doapply for family medical leave protection. research it first, employers cannot fire you for taking off for family care as long as it is suppported by a doctor. I beleive its limited to about 6 weeks a year, but I bet you could make that work for you for awhile. Also, if you were to try to work school hours vs. non school, like at the school, they may be more receptive to your situation.

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