Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Sent from T-Mobile G2 with Google Astrid wrote: >Hi all, >I rarely post here anymore since most of the people on here are parents of autistics rather than adults, but I need to vent somewhere where people understand, if only second-hand, about autistics with more complex care needs. I am not asking for advice since I am likely the only list member in my country, but I am hoping you will listen and be supportive. > >Well, for those who don't know me anymore, I am 25-years-old and diagnosed autistic. My IQ is above-average, but my functioning is not. I am verbal, although I sometimes lose the ability to speak or can only repeat phrases. I can have meltdowns wiht aggression and self-injury, although these are less extreme since going on Abilify and Celexa. In addition to autistic, I am blind and have several mental health conditions related to childhood trauma. I reside in a psychiatric hospital and have since 2007. > >The problem is I and my care team can't find housing that is suitable for my needs. There are so-called workhomes in the Netherlands, which are for normal-IQ autistics with complex care needs, but I was accepted into one and then when I went to try it out for a while, there turned out to be too little support for my needs. The point of a workhome is that you can do day activities at the same place where you live, so your day is very structured, but the staff said I couldn't do day activities because I'm blind and there is too little staff to help me individually. So the whole point of the place is lost. I don't know if other workhomes in the country have more staffing. The workhome I was accepted to was to the south of where I now live, and my husband lives two hours north from me now, so I didn't feel excited about moving to that specific workhome anyway, so maybe we can find one that is closer to wher emy husband lives. I've also considered agencies for people with intellectual disabilities, but I'm not sure I'll be accepted into one of those because as I said I have a high IQ. > >Today I spoke to my psychologist and she said that it's unlikely there is any place outside of psychiatric institutions where there is more staff than where I currently live. Background: at my current ward, I hardly cope at all. Now I don't mind liviing in a psychiatric institution, but well. To make matters worse, my psychologist inquired as to why I can't cope with less staff, and she concluded it's all my trauma-related anxiety and this needs to be treated. Well, whatever. It's lack of structure, overload, problems organizing my day, and that leads to anxiety. I guess that's autism. On top of it, no-one seems to care that I'm blind. I am supposed to do household activities, run errands, etc. on my own, while I can't. The staff here know I currently can't and help me, but constantly seem to say I can learn these things at a new place. While I'm overwhelmed now already. > >We used to get support from something called the center for consultation and expertise (CCE), but this consultant only evaluated me briefly for autism and trauma-related issues and the case manager disappeared before even having met me. Now we might involve them again, as apparently it was my staff who kicked them out when they offered to help us find placement. > >At this point, I'm so desperate. I have suicidal thoughts at times and am extremely sad and angry. I am not bad enough to be put on a secure ward, but I almost wish I was. > >I apologize for having vented so much. Thanks if you've read till here. >Astrid >astrid@... >http://www.astridvanwoerkom.com/ >http://astridvanwoerkom.wordpress.com/ >http://astridetal.wordpress.com/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Astrid, can I forward this to a parent who has an adult child with autism in an institution? > Hi all, > I rarely post here anymore since most of the people on here are parents of > autistics rather than adults, but I need to vent somewhere where people > understand, if only second-hand, about autistics with more complex care > needs. I am not asking for advice since I am likely the only list member in > my country, but I am hoping you will listen and be supportive. > > Well, for those who don't know me anymore, I am 25-years-old and diagnosed > autistic. My IQ is above-average, but my functioning is not. I am verbal, > although I sometimes lose the ability to speak or can only repeat phrases. > I can have meltdowns wiht aggression and self-injury, although these are > less extreme since going on Abilify and Celexa. In addition to autistic, I > am blind and have several mental health conditions related to childhood > trauma. I reside in a psychiatric hospital and have since 2007. > > The problem is I and my care team can't find housing that is suitable for > my needs. There are so-called workhomes in the Netherlands, which are for > normal-IQ autistics with complex care needs, but I was accepted into one > and then when I went to try it out for a while, there turned out to be too > little support for my needs. The point of a workhome is that you can do day > activities at the same place where you live, so your day is very > structured, but the staff said I couldn't do day activities because I'm > blind and there is too little staff to help me individually. So the whole > point of the place is lost. I don't know if other workhomes in the country > have more staffing. The workhome I was accepted to was to the south of > where I now live, and my husband lives two hours north from me now, so I > didn't feel excited about moving to that specific workhome anyway, so maybe > we can find one that is closer to wher emy husband lives. I've also > considered agencies for people with intellectual disabilities, but I'm not > sure I'll be accepted into one of those because as I said I have a high IQ. > > Today I spoke to my psychologist and she said that it's unlikely there is > any place outside of psychiatric institutions where there is more staff > than where I currently live. Background: at my current ward, I hardly cope > at all. Now I don't mind liviing in a psychiatric institution, but well. To > make matters worse, my psychologist inquired as to why I can't cope with > less staff, and she concluded it's all my trauma-related anxiety and this > needs to be treated. Well, whatever. It's lack of structure, overload, > problems organizing my day, and that leads to anxiety. I guess that's > autism. On top of it, no-one seems to care that I'm blind. I am supposed to > do household activities, run errands, etc. on my own, while I can't. The > staff here know I currently can't and help me, but constantly seem to say I > can learn these things at a new place. While I'm overwhelmed now already. > > We used to get support from something called the center for consultation > and expertise (CCE), but this consultant only evaluated me briefly for > autism and trauma-related issues and the case manager disappeared before > even having met me. Now we might involve them again, as apparently it was > my staff who kicked them out when they offered to help us find placement. > > At this point, I'm so desperate. I have suicidal thoughts at times and am > extremely sad and angry. I am not bad enough to be put on a secure ward, > but I almost wish I was. > > I apologize for having vented so much. Thanks if you've read till here. > Astrid > astrid@... > http://www.astridvanwoerkom.com/ > http://astridvanwoerkom.wordpress.com/ > http://astridetal.wordpress.com/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Ys, you can. Astrid astrid@... http://www.astridvanwoerkom.com/ http://astridvanwoerkom.wordpress.com/ http://astridetal.wordpress.com/ Re: Housing rant Astrid, can I forward this to a parent who has an adult child with autism in an institution? > Hi all, > I rarely post here anymore since most of the people on here are parents of > autistics rather than adults, but I need to vent somewhere where people > understand, if only second-hand, about autistics with more complex care > needs. I am not asking for advice since I am likely the only list member in > my country, but I am hoping you will listen and be supportive. > > Well, for those who don't know me anymore, I am 25-years-old and diagnosed > autistic. My IQ is above-average, but my functioning is not. I am verbal, > although I sometimes lose the ability to speak or can only repeat phrases. > I can have meltdowns wiht aggression and self-injury, although these are > less extreme since going on Abilify and Celexa. In addition to autistic, I > am blind and have several mental health conditions related to childhood > trauma. I reside in a psychiatric hospital and have since 2007. > > The problem is I and my care team can't find housing that is suitable for > my needs. There are so-called workhomes in the Netherlands, which are for > normal-IQ autistics with complex care needs, but I was accepted into one > and then when I went to try it out for a while, there turned out to be too > little support for my needs. The point of a workhome is that you can do day > activities at the same place where you live, so your day is very > structured, but the staff said I couldn't do day activities because I'm > blind and there is too little staff to help me individually. So the whole > point of the place is lost. I don't know if other workhomes in the country > have more staffing. The workhome I was accepted to was to the south of > where I now live, and my husband lives two hours north from me now, so I > didn't feel excited about moving to that specific workhome anyway, so maybe > we can find one that is closer to wher emy husband lives. I've also > considered agencies for people with intellectual disabilities, but I'm not > sure I'll be accepted into one of those because as I said I have a high IQ. > > Today I spoke to my psychologist and she said that it's unlikely there is > any place outside of psychiatric institutions where there is more staff > than where I currently live. Background: at my current ward, I hardly cope > at all. Now I don't mind liviing in a psychiatric institution, but well. To > make matters worse, my psychologist inquired as to why I can't cope with > less staff, and she concluded it's all my trauma-related anxiety and this > needs to be treated. Well, whatever. It's lack of structure, overload, > problems organizing my day, and that leads to anxiety. I guess that's > autism. On top of it, no-one seems to care that I'm blind. I am supposed to > do household activities, run errands, etc. on my own, while I can't. The > staff here know I currently can't and help me, but constantly seem to say I > can learn these things at a new place. While I'm overwhelmed now already. > > We used to get support from something called the center for consultation > and expertise (CCE), but this consultant only evaluated me briefly for > autism and trauma-related issues and the case manager disappeared before > even having met me. Now we might involve them again, as apparently it was > my staff who kicked them out when they offered to help us find placement. > > At this point, I'm so desperate. I have suicidal thoughts at times and am > extremely sad and angry. I am not bad enough to be put on a secure ward, > but I almost wish I was. > > I apologize for having vented so much. Thanks if you've read till here. > Astrid > astrid@... > http://www.astridvanwoerkom.com/ > http://astridvanwoerkom.wordpress.com/ > http://astridetal.wordpress.com/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2011 Report Share Posted November 6, 2011 Astrid, Thank you for sharing. I'm not a parent of a child with autism, but have a friend with a high functioning child. I joined this group to learn and grow my knowledge. I didn't understand the magnitude of autism. Continue to rant and share. It helps more than you know. Ray. > > Hi all, > I rarely post here anymore since most of the people on here are parents of autistics rather than adults, but I need to vent somewhere where people understand, if only second-hand, about autistics with more complex care needs. I am not asking for advice since I am likely the only list member in my country, but I am hoping you will listen and be supportive. > > Well, for those who don't know me anymore, I am 25-years-old and diagnosed autistic. My IQ is above-average, but my functioning is not. I am verbal, although I sometimes lose the ability to speak or can only repeat phrases. I can have meltdowns wiht aggression and self-injury, although these are less extreme since going on Abilify and Celexa. In addition to autistic, I am blind and have several mental health conditions related to childhood trauma. I reside in a psychiatric hospital and have since 2007. > > The problem is I and my care team can't find housing that is suitable for my needs. There are so-called workhomes in the Netherlands, which are for normal-IQ autistics with complex care needs, but I was accepted into one and then when I went to try it out for a while, there turned out to be too little support for my needs. The point of a workhome is that you can do day activities at the same place where you live, so your day is very structured, but the staff said I couldn't do day activities because I'm blind and there is too little staff to help me individually. So the whole point of the place is lost. I don't know if other workhomes in the country have more staffing. The workhome I was accepted to was to the south of where I now live, and my husband lives two hours north from me now, so I didn't feel excited about moving to that specific workhome anyway, so maybe we can find one that is closer to wher emy husband lives. I've also considered agencies for people with intellectual disabilities, but I'm not sure I'll be accepted into one of those because as I said I have a high IQ. > > Today I spoke to my psychologist and she said that it's unlikely there is any place outside of psychiatric institutions where there is more staff than where I currently live. Background: at my current ward, I hardly cope at all. Now I don't mind liviing in a psychiatric institution, but well. To make matters worse, my psychologist inquired as to why I can't cope with less staff, and she concluded it's all my trauma-related anxiety and this needs to be treated. Well, whatever. It's lack of structure, overload, problems organizing my day, and that leads to anxiety. I guess that's autism. On top of it, no-one seems to care that I'm blind. I am supposed to do household activities, run errands, etc. on my own, while I can't. The staff here know I currently can't and help me, but constantly seem to say I can learn these things at a new place. While I'm overwhelmed now already. > > We used to get support from something called the center for consultation and expertise (CCE), but this consultant only evaluated me briefly for autism and trauma-related issues and the case manager disappeared before even having met me. Now we might involve them again, as apparently it was my staff who kicked them out when they offered to help us find placement. > > At this point, I'm so desperate. I have suicidal thoughts at times and am extremely sad and angry. I am not bad enough to be put on a secure ward, but I almost wish I was. > > I apologize for having vented so much. Thanks if you've read till here. > Astrid > astrid@... > http://www.astridvanwoerkom.com/ > http://astridvanwoerkom.wordpress.com/ > http://astridetal.wordpress.com/ > > Quote Link to comment Share on other sites More sharing options...
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