clanmcculloch
DIS Veteran
- Joined
- Feb 20, 2009
- Messages
- 5,652
I'm getting towards the end of my rope and I need somebody I can just get all this out to. I love that none of you know me in real life so I can just unload on you without fear of hurting anybody I love with my unbelievable level of frustration right now.
DD13 has Asperger Syndrome. She's always obsessive compulsive tendencies associated with her AS but about 2 months before school let out they started to get worse, especially in the area of concern over cross contamination of food allergens and not knowing who last touched something and what might have been on their hands. By the last 2 weeks of school, she wouldn't even go to the bathroom at school unless she was at the point where was risking an accident at which point she'd go to the nurse's office and thank goodness the amazingly patient and wonderful nurse would actually clean the toilet for her. During this same time her aid was also having to clean her desk and chair for her in order for her to sit down because she was freaking out over what the previous person sitting there might have eaten and did they have crumbs on their hands, etc. I should mention that her allergies are not anaphylactic, they cause some GI issues and worstening autistic issues so it's not like she's had some kind of near death experience to traumatize her.
Well, since summer began, it's only gotten worse. Things have now gotten to the point where it's not just food but also germs. I'm the only person who is allowed to physically touch her and even then it's only when SHE initiates or else she goes into a panic where she just can't function because she doesn't feel clean. She's been washing her hands so often that she has sores. She can't put cream on her hands herself because no matter how many times I clean the jar it's not clean so I have to put it on for her but I'm at work all day. She can't turn the tap on and off herself unless she has what she deems to be a clean cloth (meaning nobody but her touched it and it hasn't touched the floor) so she constantly asks me to do it when I'm at home and her little sister (who is incidentally having totally understandable meltdowns of her own over the stress of all this) when I'm not there though she ends up generally yelling at her sister for not doing it right (too hot, too cold, too strong, not strong enough). She calls me at work with meltdowns all day long. She has to wash her hands if she touches her own feet, if she touches ANYTHING that she deems unclean (which is almost everything). Going to the bathroom is a whole production of its own. She can barely leave the house because anywhere she goes seems to be unclean. She has trouble getting to sleep at night because her mind won't turn off. She calls out to me every 10-15 minutes about some obsession or another until I end up yelling at her to stop calling to me unless she's bleeding or dying. Yes, I'm at the end of my rope and I hate doing that but I don't know what else to do.
DH can't help her at all because somehow he's become the focus of some of her obsessions and anything he touches is immediately considered unclean. It doesn't help that he's the kind of person who really isn't capable of seeing things from another person's point of view and doesn't understand what real obsessive compulsive issues are, despite his oldest have classic OCD (it was me who had to put my foot down and insist that she get help despite being the step-parent; bio parents just couldn't conceive of what a psychiatric problem really is). He ends up just yelling at her which of course just makes things worse. They barely speak to each other but I have to listen to each of them vent to me about each other. I tell them, beg them, to stop since it's just putting that much more stress on me and not actually accomplishing anything but it doesn't matter and they just don't stop.
She started with a therapist last week but I really don't know what a once a week appointment will do in the short term. Last week included me and was going over her history and explaining the problems that need adressing. Today will be basically raport building. I don't think I can cope with this until she gets to the point where she's actually dealing with this. I'm welling up in tears sitting here right now typing this because I'm so overwhelmed.
She says she absolutely refuses medication. I don't know why and can't get any kind of explaination out of her. I suspect it's part of the obsessive compulsive stuff that she just can't explain. Years ago when she was misdiagnosed with OCD (though now I'm wondering if she really does now have true OCD) she was medicated with Zoloft and became violent. Can you imagine a violent 3 year old? I've seen it, it's not pleasant. Anyway, the psychiatrist said she should never ever take SSRIs again after that. Not just Zoloft but any SSRI. Anyway, even if we did try medication, it takes a long time for it to kick in and get titered up to the right dose so again I don't know how I'll cope until that happens even if we do end up going that route.
We head to WDW in 15 days. Because of this I'm NOT starting any new medications that have the potential for side effects. I've told her that I'm really nervous about our trip because I'm worried that she won't be able to even leave the room. She looked at me like I had 2 heads and proclaimed that WDW is her happy place and it's clean so there shouldn't be any problems (that's my girl). Hopefully in that obsessive compulsive part of her brain she really does believe this but I'm still worried. Unbelievably worried. I'm actually holding off on booking flights for a February trip until I see how she does in a couple weeks. Luckily there is something about WDW that does seem to calm her but I can't even express how nervous I am about our upcoming trip. She can't even cope at home, how will she handly everything else? I'm mentally preparing for maybe renting a wheelchair to give her a buffer zone so nobody bumps her but I know DH is VERY opposed to this.
When we get home, school starts a few days later. How the heck will she function at school? When do I call the school to tell them what's going on and what do I even say?
Anyway, if you're still reading along, thank you for listening to me unload. If you have ANY suggestions, I'm all ears. If not, thanks again for just letting me get all this out.
DD13 has Asperger Syndrome. She's always obsessive compulsive tendencies associated with her AS but about 2 months before school let out they started to get worse, especially in the area of concern over cross contamination of food allergens and not knowing who last touched something and what might have been on their hands. By the last 2 weeks of school, she wouldn't even go to the bathroom at school unless she was at the point where was risking an accident at which point she'd go to the nurse's office and thank goodness the amazingly patient and wonderful nurse would actually clean the toilet for her. During this same time her aid was also having to clean her desk and chair for her in order for her to sit down because she was freaking out over what the previous person sitting there might have eaten and did they have crumbs on their hands, etc. I should mention that her allergies are not anaphylactic, they cause some GI issues and worstening autistic issues so it's not like she's had some kind of near death experience to traumatize her.
Well, since summer began, it's only gotten worse. Things have now gotten to the point where it's not just food but also germs. I'm the only person who is allowed to physically touch her and even then it's only when SHE initiates or else she goes into a panic where she just can't function because she doesn't feel clean. She's been washing her hands so often that she has sores. She can't put cream on her hands herself because no matter how many times I clean the jar it's not clean so I have to put it on for her but I'm at work all day. She can't turn the tap on and off herself unless she has what she deems to be a clean cloth (meaning nobody but her touched it and it hasn't touched the floor) so she constantly asks me to do it when I'm at home and her little sister (who is incidentally having totally understandable meltdowns of her own over the stress of all this) when I'm not there though she ends up generally yelling at her sister for not doing it right (too hot, too cold, too strong, not strong enough). She calls me at work with meltdowns all day long. She has to wash her hands if she touches her own feet, if she touches ANYTHING that she deems unclean (which is almost everything). Going to the bathroom is a whole production of its own. She can barely leave the house because anywhere she goes seems to be unclean. She has trouble getting to sleep at night because her mind won't turn off. She calls out to me every 10-15 minutes about some obsession or another until I end up yelling at her to stop calling to me unless she's bleeding or dying. Yes, I'm at the end of my rope and I hate doing that but I don't know what else to do.
DH can't help her at all because somehow he's become the focus of some of her obsessions and anything he touches is immediately considered unclean. It doesn't help that he's the kind of person who really isn't capable of seeing things from another person's point of view and doesn't understand what real obsessive compulsive issues are, despite his oldest have classic OCD (it was me who had to put my foot down and insist that she get help despite being the step-parent; bio parents just couldn't conceive of what a psychiatric problem really is). He ends up just yelling at her which of course just makes things worse. They barely speak to each other but I have to listen to each of them vent to me about each other. I tell them, beg them, to stop since it's just putting that much more stress on me and not actually accomplishing anything but it doesn't matter and they just don't stop.
She started with a therapist last week but I really don't know what a once a week appointment will do in the short term. Last week included me and was going over her history and explaining the problems that need adressing. Today will be basically raport building. I don't think I can cope with this until she gets to the point where she's actually dealing with this. I'm welling up in tears sitting here right now typing this because I'm so overwhelmed.
She says she absolutely refuses medication. I don't know why and can't get any kind of explaination out of her. I suspect it's part of the obsessive compulsive stuff that she just can't explain. Years ago when she was misdiagnosed with OCD (though now I'm wondering if she really does now have true OCD) she was medicated with Zoloft and became violent. Can you imagine a violent 3 year old? I've seen it, it's not pleasant. Anyway, the psychiatrist said she should never ever take SSRIs again after that. Not just Zoloft but any SSRI. Anyway, even if we did try medication, it takes a long time for it to kick in and get titered up to the right dose so again I don't know how I'll cope until that happens even if we do end up going that route.
We head to WDW in 15 days. Because of this I'm NOT starting any new medications that have the potential for side effects. I've told her that I'm really nervous about our trip because I'm worried that she won't be able to even leave the room. She looked at me like I had 2 heads and proclaimed that WDW is her happy place and it's clean so there shouldn't be any problems (that's my girl). Hopefully in that obsessive compulsive part of her brain she really does believe this but I'm still worried. Unbelievably worried. I'm actually holding off on booking flights for a February trip until I see how she does in a couple weeks. Luckily there is something about WDW that does seem to calm her but I can't even express how nervous I am about our upcoming trip. She can't even cope at home, how will she handly everything else? I'm mentally preparing for maybe renting a wheelchair to give her a buffer zone so nobody bumps her but I know DH is VERY opposed to this.
When we get home, school starts a few days later. How the heck will she function at school? When do I call the school to tell them what's going on and what do I even say?
Anyway, if you're still reading along, thank you for listening to me unload. If you have ANY suggestions, I'm all ears. If not, thanks again for just letting me get all this out.
I'm sorry you're all having such a hard time. I know that SSRIs can cause issues. DD takes zoloft but we can't increase the dose at all (she's been taking the same amount since she was 9 and she's 12) because it causes disinhibition and all her emotions are amplified.
) about cancellations. Become the scheduling person's best friend. I've been able to get my dd's appts moved up by months by doing that. Of course, you may have to drop everything and go at the last minute, but let them know that that is a possibility...if it is.
