Guest guest Posted May 1, 2012 Report Share Posted May 1, 2012 So sorry to hear what you're going through. I've been there. Last summer we too were home bound, While waiting to get to the right CBT/ERP therapist. It was a Hellish summer that I'd like to erase from my memory!! The good news is that after 8 weeks of ERP (intensive, 4 days/week, 3 hours /day), we have our son back and all is well! Don't give up Hope! OCD is treatable! Best, Sent from my iPhone > I've been struggling this morning trying to accept the facts of my DD's situation and realizing that we're basically home bound. > Everytime we have left the house the past week the trip was absolute h e l l. > My 4 year old DD won't wear socks because she has intrusive thoughts that the sock will take her toes off and then some days she won't even wear shoes. How can I take her anywhere with out shoes? She is too big to carry and she will scream bloody murder if I try to put her in a stroller. We tried flip flops but she refuses to walk in them. > > She had been doing horse lessons once a week but the entire lesson she just stares at her fingers and doesn't pay attention. I am throwing money away. It took 2 hours to get her dressed just to leave for the horse lesson. I had to beg her to get dressed. > > I am just done! I just have to accept the fact that we can't leave right now while we're still in " crisis " mode. > > I am cancelling all our obligations except her weekly therapy. It's just so frustrating because It feels like no one knows what I am going through with her. When I tell my friends she has OCD it's like they don't believe me or they don't think it's a big deal. They have this image in their head like she's just lining up crayons all day or something or I am not disciplining her enough. > > So now, we are home. She is happy playing with her toys and I guess this is where we are staying for awhile. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2012 Report Share Posted May 1, 2012 Hi , It's good to do what you need to do for yourself as much as for your daughter, so if that's to stay at home and not have to go through all the aggravation, that's what you do. When you are in " crisis mode " it's definitely good to do whatever you need to just to get through the day. Do try to get out and do something everyday though, because they will just shut down that much more if they don't have to go anywhere. Ours would wear rubber boots without sox for a while, was easy on and off, maybe even slippers. Just some thoughts. Been through the housebound stage many times here. Kind of where we are again right now, so I can relate to your frustrations, and people not understanding. Our son is almost 21, and it's been 6 years since severe onset, was there when younger, but didn't know. I managed to get our son out of the house today to go to his Dad's restaurant, and where he can visit his grandparents. They know how bad it can be for our son, he's actually lived with them for a while. Even still, they will ask how things are, and what he is going to do for the summer, saying he should be getting a job... and I could scream. I would love him to get a job, but he needs to actually be able to get out of the house. When I mention that it was very hard for him to leave the house, he was not going to come etc, they say " he looks fine " . Ahhhhh.... No kidding, he look fine, it's the behind closed doors goings on that no one sees or has a clue about that is the challenge for everyone. No matter how long a non-family member knows about OCD they still can't get what it is like to live with it, how life limiting it can be, and how it can completely exhaust you on the bad days, or when things are just not good. It is hard for anyone else to understand that just getting out the door is a major task, one that sometimes you decide you just aren't up for. At 20 I don't know that it's that much different than at 4. I was going to say the tantrums, but instead I get " hounded " verbally, followed around, and basically have to hide. It is nothing like it was at the beginning, our son IS doing ok compared to then, but just normal daily living of any kind can be a challenge, that sometimes they decide they don't want to fight the OCD for. As someone mentions, once they start doing the ERP treatment it can turn around quickly. Do you have the book, What to do when your brain gets stuck? Or any books for young kids - check our booklist in the files section. Just might be able to start gently doing the ERP on your own. Hang in there. Do look after yourself and get out and away from it all. You really need to pace yourself, Dr.Chansky describes it as a marathon and it is, so you need to keep your own strength and sanity - good luck with that one Warmly, Barb > > I've been struggling this morning trying to accept the facts of my DD's situation and realizing that we're basically home bound. > Everytime we have left the house the past week the trip was absolute h e l l. > My 4 year old DD won't wear socks because she has intrusive thoughts that the sock will take her toes off and then some days she won't even wear shoes. How can I take her anywhere with out shoes? She is too big to carry and she will scream bloody murder if I try to put her in a stroller. We tried flip flops but she refuses to walk in them. > > She had been doing horse lessons once a week but the entire lesson she just stares at her fingers and doesn't pay attention. I am throwing money away. It took 2 hours to get her dressed just to leave for the horse lesson. I had to beg her to get dressed. > > I am just done! I just have to accept the fact that we can't leave right now while we're still in " crisis " mode. > > I am cancelling all our obligations except her weekly therapy. It's just so frustrating because It feels like no one knows what I am going through with her. When I tell my friends she has OCD it's like they don't believe me or they don't think it's a big deal. They have this image in their head like she's just lining up crayons all day or something or I am not disciplining her enough. > > So now, we are home. She is happy playing with her toys and I guess this is where we are staying for awhile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2012 Report Share Posted May 2, 2012 I understand your issues well, life is so difficult. My daughter did enjoy activities at home that an occupational therapist taught me to do with her. It was helpful to find things that she could enjoy. There are many books on sensory integration for sensitive children. My daughter enjoyed swinging on swings, jumping on a trampoline, rolling around on a big ball. She did not tolerate things like brushing which is suppose to help when things don't feel right (socks etc). There are other things for sensory issues like playing in sand, rolling around in plastic balls etc. My daughter is 14 now at age 12 we finally started the anti-depressant and it made a significant difference. Pam > > I've been struggling this morning trying to accept the facts of my DD's situation and realizing that we're basically home bound. > Everytime we have left the house the past week the trip was absolute h e l l. > My 4 year old DD won't wear socks because she has intrusive thoughts that the sock will take her toes off and then some days she won't even wear shoes. How can I take her anywhere with out shoes? She is too big to carry and she will scream bloody murder if I try to put her in a stroller. We tried flip flops but she refuses to walk in them. > > She had been doing horse lessons once a week but the entire lesson she just stares at her fingers and doesn't pay attention. I am throwing money away. It took 2 hours to get her dressed just to leave for the horse lesson. I had to beg her to get dressed. > > I am just done! I just have to accept the fact that we can't leave right now while we're still in " crisis " mode. > > I am cancelling all our obligations except her weekly therapy. It's just so frustrating because It feels like no one knows what I am going through with her. When I tell my friends she has OCD it's like they don't believe me or they don't think it's a big deal. They have this image in their head like she's just lining up crayons all day or something or I am not disciplining her enough. > > So now, we are home. She is happy playing with her toys and I guess this is where we are staying for awhile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2012 Report Share Posted May 2, 2012 Boy, do I feel your pain. My daughter (3.9) won't wear clothes at all. Until November, she would wear a couple of items (but not without a lot of problems). Since then, she will not wear anything. Fortunately, I work from home so she has as nanny. I can use some of that time to get out and do what I need to do (but it gets really expensive). Otherwise, I would be completely crazy. In a week, we are starting an intensive program. I don't know what I'll do if it doesn't work. It is SO hard. Too bad we're not neighbors. They could hang out at home together! > > I've been struggling this morning trying to accept the facts of my DD's situation and realizing that we're basically home bound. > Everytime we have left the house the past week the trip was absolute h e l l. > My 4 year old DD won't wear socks because she has intrusive thoughts that the sock will take her toes off and then some days she won't even wear shoes. How can I take her anywhere with out shoes? She is too big to carry and she will scream bloody murder if I try to put her in a stroller. We tried flip flops but she refuses to walk in them. > > She had been doing horse lessons once a week but the entire lesson she just stares at her fingers and doesn't pay attention. I am throwing money away. It took 2 hours to get her dressed just to leave for the horse lesson. I had to beg her to get dressed. > > I am just done! I just have to accept the fact that we can't leave right now while we're still in " crisis " mode. > > I am cancelling all our obligations except her weekly therapy. It's just so frustrating because It feels like no one knows what I am going through with her. When I tell my friends she has OCD it's like they don't believe me or they don't think it's a big deal. They have this image in their head like she's just lining up crayons all day or something or I am not disciplining her enough. > > So now, we are home. She is happy playing with her toys and I guess this is where we are staying for awhile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2012 Report Share Posted May 2, 2012 Boy, do I feel your pain. My daughter (3.9) won't wear clothes at all. Until November, she would wear a couple of items (but not without a lot of problems). Since then, she will not wear anything. Fortunately, I work from home so she has as nanny. I can use some of that time to get out and do what I need to do (but it gets really expensive). Otherwise, I would be completely crazy. In a week, we are starting an intensive program. I don't know what I'll do if it doesn't work. It is SO hard. Too bad we're not neighbors. They could hang out at home together! > > I've been struggling this morning trying to accept the facts of my DD's situation and realizing that we're basically home bound. > Everytime we have left the house the past week the trip was absolute h e l l. > My 4 year old DD won't wear socks because she has intrusive thoughts that the sock will take her toes off and then some days she won't even wear shoes. How can I take her anywhere with out shoes? She is too big to carry and she will scream bloody murder if I try to put her in a stroller. We tried flip flops but she refuses to walk in them. > > She had been doing horse lessons once a week but the entire lesson she just stares at her fingers and doesn't pay attention. I am throwing money away. It took 2 hours to get her dressed just to leave for the horse lesson. I had to beg her to get dressed. > > I am just done! I just have to accept the fact that we can't leave right now while we're still in " crisis " mode. > > I am cancelling all our obligations except her weekly therapy. It's just so frustrating because It feels like no one knows what I am going through with her. When I tell my friends she has OCD it's like they don't believe me or they don't think it's a big deal. They have this image in their head like she's just lining up crayons all day or something or I am not disciplining her enough. > > So now, we are home. She is happy playing with her toys and I guess this is where we are staying for awhile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2012 Report Share Posted May 3, 2012 Hang in there. Once the therapy & exposures start it will get better. I finally had to accept that no one, particularly friends & family, will understand...ever. They can try, but they won't get it. Just continue doing what you know you need to & ignore inane comments from others. If it's time, work with the therapist on some foot/sock exposures to help get your daughter out of the house. The advice about trying to get out each day & do something is very good, it will help whether it feels like it or not. Be sure to take some time " off " from your daughter & OCD to preserve your energy & sanity. Good luck to you. Dot > > I've been struggling this morning trying to accept the facts of my DD's situation and realizing that we're basically home bound. > Everytime we have left the house the past week the trip was absolute h e l l. > My 4 year old DD won't wear socks because she has intrusive thoughts that the sock will take her toes off and then some days she won't even wear shoes. How can I take her anywhere with out shoes? She is too big to carry and she will scream bloody murder if I try to put her in a stroller. We tried flip flops but she refuses to walk in them. > > She had been doing horse lessons once a week but the entire lesson she just stares at her fingers and doesn't pay attention. I am throwing money away. It took 2 hours to get her dressed just to leave for the horse lesson. I had to beg her to get dressed. > > I am just done! I just have to accept the fact that we can't leave right now while we're still in " crisis " mode. > > I am cancelling all our obligations except her weekly therapy. It's just so frustrating because It feels like no one knows what I am going through with her. When I tell my friends she has OCD it's like they don't believe me or they don't think it's a big deal. They have this image in their head like she's just lining up crayons all day or something or I am not disciplining her enough. > > So now, we are home. She is happy playing with her toys and I guess this is where we are staying for awhile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2012 Report Share Posted May 3, 2012 Hang in there. Once the therapy & exposures start it will get better. I finally had to accept that no one, particularly friends & family, will understand...ever. They can try, but they won't get it. Just continue doing what you know you need to & ignore inane comments from others. If it's time, work with the therapist on some foot/sock exposures to help get your daughter out of the house. The advice about trying to get out each day & do something is very good, it will help whether it feels like it or not. Be sure to take some time " off " from your daughter & OCD to preserve your energy & sanity. Good luck to you. Dot > > I've been struggling this morning trying to accept the facts of my DD's situation and realizing that we're basically home bound. > Everytime we have left the house the past week the trip was absolute h e l l. > My 4 year old DD won't wear socks because she has intrusive thoughts that the sock will take her toes off and then some days she won't even wear shoes. How can I take her anywhere with out shoes? She is too big to carry and she will scream bloody murder if I try to put her in a stroller. We tried flip flops but she refuses to walk in them. > > She had been doing horse lessons once a week but the entire lesson she just stares at her fingers and doesn't pay attention. I am throwing money away. It took 2 hours to get her dressed just to leave for the horse lesson. I had to beg her to get dressed. > > I am just done! I just have to accept the fact that we can't leave right now while we're still in " crisis " mode. > > I am cancelling all our obligations except her weekly therapy. It's just so frustrating because It feels like no one knows what I am going through with her. When I tell my friends she has OCD it's like they don't believe me or they don't think it's a big deal. They have this image in their head like she's just lining up crayons all day or something or I am not disciplining her enough. > > So now, we are home. She is happy playing with her toys and I guess this is where we are staying for awhile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2012 Report Share Posted May 3, 2012 That reminds me that sometimes when my daughter was beyond stressed when she was younger, I would just lay down on the couch and she would lay down on top of me and I would just hug her and without words, it helped ease some of the stress that was wracking her mind and body. We struggled with her severe OCD from very early on until 4th grade when we found the right medication for her. We had tried different medications from 2nd grade on, but it wasn't until 4th grade that we found the one that took away the strange OCD thoughts that made her so " different " from her peers. I also should say that I made my daughter go places and do things that she feared because when you don't, it reinforces in the person with OCD's mind that the fear is valid. I didn't do it all the time and everywhere, but as much as possible. Re: Home Bound Hang in there. Once the therapy & exposures start it will get better. I finally had to accept that no one, particularly friends & family, will understand...ever. They can try, but they won't get it. Just continue doing what you know you need to & ignore inane comments from others. If it's time, work with the therapist on some foot/sock exposures to help get your daughter out of the house. The advice about trying to get out each day & do something is very good, it will help whether it feels like it or not. Be sure to take some time " off " from your daughter & OCD to preserve your energy & sanity. Good luck to you. Dot > > I've been struggling this morning trying to accept the facts of my DD's situation and realizing that we're basically home bound. > Everytime we have left the house the past week the trip was absolute h e l l. > My 4 year old DD won't wear socks because she has intrusive thoughts that the sock will take her toes off and then some days she won't even wear shoes. How can I take her anywhere with out shoes? She is too big to carry and she will scream bloody murder if I try to put her in a stroller. We tried flip flops but she refuses to walk in them. > > She had been doing horse lessons once a week but the entire lesson she just stares at her fingers and doesn't pay attention. I am throwing money away. It took 2 hours to get her dressed just to leave for the horse lesson. I had to beg her to get dressed. > > I am just done! I just have to accept the fact that we can't leave right now while we're still in " crisis " mode. > > I am cancelling all our obligations except her weekly therapy. It's just so frustrating because It feels like no one knows what I am going through with her. When I tell my friends she has OCD it's like they don't believe me or they don't think it's a big deal. They have this image in their head like she's just lining up crayons all day or something or I am not disciplining her enough. > > So now, we are home. She is happy playing with her toys and I guess this is where we are staying for awhile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2012 Report Share Posted May 4, 2012 AGHHHH! I have been dying to respond to your post about the shoes and socks making you homebound but have been too busy. Everyone here knows what you are going through to one degree or another, and I agree with all that once you start the exposures and therapy things will get better ( may get worse at first- hard to imagine I know). However you can start treating the shoes issue right now either with or without socks ( maybe ask her if she wants to try just shoes or shoes and socks) The socks are not critical but the shoes are if you are ever going to leave the house. Ready for a crash course on shoe (clothing) exposure therapy while you wait for your appointment? Get her a childs book about OCD -see previous posts or files section for suggestions Explain to her that her OCD is keeping you(her) from doing fun things, that you love her and are not going to let OCD ruin her life Explain to her that you know it is really hard and scairy to wear shoes( socks) but that she is going to have to do it while at home for a short period of time daily to help her body and mind get used to it and that as she wears the shoes(socks) her body and mind will get used to it and it will become less uncomfortable ( I used the hot bath analogy when my son was 3- when you get into a hot bath at first it is too hot , but if you count to 10 it becomes OK because your body adjusts. explain to her that for her hard work each day she can get a reward, and at the end when she is able to go places she can get a big reward. Brainstorm with her what might motivate her ( a treat or sticker or piece of gum daily and a trip to the toy store to pick something out at the end- something like that- I dont know what will work for her but find something she loves and use it to drive the process. Find a time during the day when you know you have a good one to 2 hours to kill make an uncomfortableness (fear) chart from 0-10. Tell her she needs to put on the shoes ( let her pick the shoes she thinks would be easiest) and leave them on , in the house until they stop feeling so uncomfortable. Assure her that this will happen and the two of you will make a chart to watch how she gets used to it I have a chart which looks like this: Fear scale Pre task 1 min 2 min 5 min 10 min 15 min 20 min list the task ( ie wearing shoes) make multiple rows so you can use t the chart for a week or so Chart a pretask fear score Have her put on the offending item. Let her know that the fear will likely increase over the first couple minutes, but that she is ok, you are there with her, this is just her OCD playing tricks on her and the fear will get better just like the bath ( maybe you could even do a pre exposure demonstration with a hot bath or eyes getting used to the dark to show how the body accomidates) Here comes the really hard part- let her sit in the fear, supported by you, melting down if necessary with you reassuring her that she will be ok and the fear will get better over time .Continue the exposure, not distracting her but helping her to focus on the fear until it peaks and then goes down ( this will usually happen within 20-30 min). You do not want to stop the exposure before the fear goes down significantly or it will reinforce the fear. Remind her that she does not have to wear them all day, but this is an exposure and she only needs to do it for a short time and there is a prize at the end. Do not get sucked in to reassuring her that her toes are ok, just keep reminding her that her fear is her OCD playing tricks on her and when she fights back her OCD gets smaller and smaller until it disapears. The fear should go down from it's peak to at least half if not down to a 0 or 1 or 2. When you are done tell her how proud you are and give her the prize. Show her the chart of how she beat OCD today. tell her you will be doing it again tomorrow ( or later in the day depending on how many times a day you have time/ energy to do it.) Repeat until the exercise is no longer difficult (can take several weeks, but may begin to see results in several days). Put on some shoes and celebrate by going to the toystore or out to dinner or whatever big prize you agreed on then move onto the next agenda item that is difficult and repeat the process Ideally you start with easier stuff first and work up to the hard stuff, but some something like shoes she needs to be to wear them to go anywhere and warrants working on sooner. Good luck. It is really hard especially with such a young child, but unless you are really lucky and live in an area with a pediatric OCD specialty center, good luck with trying to find a good therapist to work with her, so you need to become an expert in CBT/ ERP ( also dont waste your time with anyone who does not do CBT/ERP as a treatment- you whould be doing it within the first 3- 5 visits.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2012 Report Share Posted May 4, 2012 AGHHHH! I have been dying to respond to your post about the shoes and socks making you homebound but have been too busy. Everyone here knows what you are going through to one degree or another, and I agree with all that once you start the exposures and therapy things will get better ( may get worse at first- hard to imagine I know). However you can start treating the shoes issue right now either with or without socks ( maybe ask her if she wants to try just shoes or shoes and socks) The socks are not critical but the shoes are if you are ever going to leave the house. Ready for a crash course on shoe (clothing) exposure therapy while you wait for your appointment? Get her a childs book about OCD -see previous posts or files section for suggestions Explain to her that her OCD is keeping you(her) from doing fun things, that you love her and are not going to let OCD ruin her life Explain to her that you know it is really hard and scairy to wear shoes( socks) but that she is going to have to do it while at home for a short period of time daily to help her body and mind get used to it and that as she wears the shoes(socks) her body and mind will get used to it and it will become less uncomfortable ( I used the hot bath analogy when my son was 3- when you get into a hot bath at first it is too hot , but if you count to 10 it becomes OK because your body adjusts. explain to her that for her hard work each day she can get a reward, and at the end when she is able to go places she can get a big reward. Brainstorm with her what might motivate her ( a treat or sticker or piece of gum daily and a trip to the toy store to pick something out at the end- something like that- I dont know what will work for her but find something she loves and use it to drive the process. Find a time during the day when you know you have a good one to 2 hours to kill make an uncomfortableness (fear) chart from 0-10. Tell her she needs to put on the shoes ( let her pick the shoes she thinks would be easiest) and leave them on , in the house until they stop feeling so uncomfortable. Assure her that this will happen and the two of you will make a chart to watch how she gets used to it I have a chart which looks like this: Fear scale Pre task 1 min 2 min 5 min 10 min 15 min 20 min list the task ( ie wearing shoes) make multiple rows so you can use t the chart for a week or so Chart a pretask fear score Have her put on the offending item. Let her know that the fear will likely increase over the first couple minutes, but that she is ok, you are there with her, this is just her OCD playing tricks on her and the fear will get better just like the bath ( maybe you could even do a pre exposure demonstration with a hot bath or eyes getting used to the dark to show how the body accomidates) Here comes the really hard part- let her sit in the fear, supported by you, melting down if necessary with you reassuring her that she will be ok and the fear will get better over time .Continue the exposure, not distracting her but helping her to focus on the fear until it peaks and then goes down ( this will usually happen within 20-30 min). You do not want to stop the exposure before the fear goes down significantly or it will reinforce the fear. Remind her that she does not have to wear them all day, but this is an exposure and she only needs to do it for a short time and there is a prize at the end. Do not get sucked in to reassuring her that her toes are ok, just keep reminding her that her fear is her OCD playing tricks on her and when she fights back her OCD gets smaller and smaller until it disapears. The fear should go down from it's peak to at least half if not down to a 0 or 1 or 2. When you are done tell her how proud you are and give her the prize. Show her the chart of how she beat OCD today. tell her you will be doing it again tomorrow ( or later in the day depending on how many times a day you have time/ energy to do it.) Repeat until the exercise is no longer difficult (can take several weeks, but may begin to see results in several days). Put on some shoes and celebrate by going to the toystore or out to dinner or whatever big prize you agreed on then move onto the next agenda item that is difficult and repeat the process Ideally you start with easier stuff first and work up to the hard stuff, but some something like shoes she needs to be to wear them to go anywhere and warrants working on sooner. Good luck. It is really hard especially with such a young child, but unless you are really lucky and live in an area with a pediatric OCD specialty center, good luck with trying to find a good therapist to work with her, so you need to become an expert in CBT/ ERP ( also dont waste your time with anyone who does not do CBT/ERP as a treatment- you whould be doing it within the first 3- 5 visits.) Quote Link to comment Share on other sites More sharing options...
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