Child is in in hospital.. need help!

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stareeyedmom
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15 Apr 2012, 9:04 pm

This video has my daughter history under it. The video is about her hoarding. I posted this video this week as a plea. She has since been hospitalized for a second time for self-injury. I need help. I have had to miss so much work that we are won't even have a home soon. I need to find some answers for her. Thank you for any suggestions!

The video is on youtube. com / watch?v=sIy8-LpEuWg

Sorry it won't let me post the link because I haven't made enough post.



lostgirl1986
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15 Apr 2012, 9:35 pm

I'm sorry to hear about your circumstances. Would she notice if you went in her room while she was gone and removed a few pieces of garbage off of the floor?

I know her room isn't dirty but maybe you can try explaining to her that if she has too much stuff in her room and she doesn't keep it neat it will attract bugs like carpet beetles/larva or something that she wont like. I don't know if she'll just obsess over that but it's an idea.

Good Luck! :)



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15 Apr 2012, 9:37 pm

[youtube]http://www.youtube.com/watch?v=sIy8-LpEuWg[/youtube]

Here's the vid you were trying to post.


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15 Apr 2012, 11:38 pm

:cry: Seems like a sweet, though undeniably troubled child. I wish there was some way I could help but I think this is best left to professionals.

I am just curious, though, did her hoarding and PDD-like symptoms start before or after the medical issues at age 4?



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16 Apr 2012, 12:07 am

just out of curiosity... why does she have a choice as to whether stuff is thrown away? if it's garbage, why does she have the option to say no?


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16 Apr 2012, 12:13 am

Well this certainly is hoarding, but the question is, why us is she hoarding?

Hoarding as a clinical disorder is actually distinct from OCD. Some people with OCD may hoard but they usually do it because they fear throwing out an item will hurt someone in some way. For example, a person with OCD might be afraid to throw out a piece of string because they might fear a bird will become tangled in it. Or they might fear flushing their urine because they can't shake the feeling it will get into the environment and harm someone. But hoarding as a symptom of OCD is fairly rare.

Clinical hoarders, on the other hand, most often hoard because they attach an unusual degree of significance to objects most individuals would tag as insignificant, and this seems to be what your daughter is doing. In her case, it actually isn't the hoarding that's the problem. The hoarding is a symptom of the real problem, which is that she attaches an excessive amount of significance to these objects.

It would be advisable to have her seen by a child psychologist who has experience with hoarders. You will usually find them in child OCD and Anxiety programs simply because hoarding used to be seen as a symptom of OCD.

I would probably try to lay down some ground rules to help control her hoarding myself, but this needs to be done carefully. One mistake people often make when dealing with hoarders is that they take all of their stuff, throw it away, and think that solves the problem. But it doesn't solve the problem, it simply makes the hoarder feel victimized and intruded upon. Another mistake people make is they attempt to hold hoarders to standards most people don't adhere to. Most people do collect certain seemingly useless things to some degree. It might be a Franklin Mint collection, or a drawer of rubber bands they've saved from the newspaper. They might have a cupboard of wrapping paper they've saved, or a garage strewn with stuff they've intended to use for something and never did.

That being said, hoarders should be allowed to hoard, just within reason.

For your daughter, I would lay down these rules.

1. She can get a new toy but she can't keep the box unless she keeps the toy in it.
2. She may keep a few rubber bands but if she is going to use them for her hair, she needs to keep them with her hair accessories, otherwise she can keep them in a place you decide.
3. She may keep as much paper and cardboard she wants, provided it can fit in a plastic craft container which you supply her with. The lid must also easily. She must also keep her other arts and craft items in there.

Do you see the logic here? You are setting limits but at the same time respecting that certain things are important to her.

Additionally, I would probably try to explain to her that if everything is special, then nothing is special, because something being special means it's different from others like it in some unusual way. I would also explain to her that when you have so many things that you can't use them, then you make them useless, and it would be better to recycle them, or donate them, or throw them away.



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16 Apr 2012, 7:50 am

Hi stareeyedmom

I can completely empathise with you on this. Your daughter seems to be very similar to my 6yr old girl. Even the way she responds to you, trying to pick things to go out, is uncannily like my girl. She calls everything her 'favourite', although I know she only has one favourite thing, her teddy.

I'm really sorry that I don't have any suggestions, as I'm in a similar situation just now. So far, the only way we've been able to get rid of anything has been by hiding it away for several months (maybe even a year) and then, once we're sure she has forgotten about it, we then feel confident to take it to the charity shop (baby toys and books) or bin it (packaging, bits of paper, etc). However, this is not going to help in the long run and certainly not for when she's an adult. But, it's the only thing that we can do to prevent having to swim through piles of junk in her room.

However, when it comes to little scraps, like in your video, I would just bin it without even asking her. Would that ever be possible for you to do? I doubt my daughter would notice a single elastic band or a thin strip of paper had disappeared. If she was confronted with it, she'd refuse to part with it, otherwise I don't think she would notice it had gone.

I hope all goes well for you and your daughter.

Mummy_of_Peanut


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stareeyedmom
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16 Apr 2012, 5:39 pm

I really appreciate every one's reply. :) I have been so busy trying to deal with everything. Since she is in the hospital, I am trying to make sure that I have a plan for when she gets out. Just to answer a few questions.. She does have rules that she is suppose to follow. The problem comes with enforcing those rules and against our schedule. We have to make sure that we throw things away on trash day, if not she digs through the trash. She gets privileges taken away when she does not obey. It is always a struggle to clean or enforce cleaning. She has other issues that we are dealing with also that are more severe than the hoarding. The hoarding is just a physical complaint that is easy to record. I am hoping that I will have more time to reply tomorrow. . I am so overwhelmed right now keeping up with everything. Thank you again for your ideas!



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16 Apr 2012, 7:27 pm

I hope you're bringing this video with you to whoever is treating your daughter: it's a good tool. We're just parents here, and we don't have enough information to diagnose anyone - but FWIW my son has some similar behaviors: he is diagnosed with Asperger's but even though he isn't diagnosed with OCD he has some OCD-like symptoms. We did have good success with the book What To Do When Your Brain Gets Stuck, but he was older than your daughter (10) when we worked through it. http://www.amazon.com/What-When-Brain-S ... 1591478057 Autism is often diagnosed alongside other issues, especially various types of anxiety, so be prepared that it may be more than one thing.

My son has a mental inventory of every. single. thing. in his room: every scrap of paper, every Happy Meal Toy, everything. We used to go in and take stuff out while he was gone, and he'd melt down when we got home. (He was less resistant to getting rid of things than your daughter, but still pretty resistant.) We finally made an agreement: nothing goes in unless something comes out. This meant that before his birthday and Christmas, he had to choose approximately the number of toys he was planning to receive to donate.

I think some of the mechanism driving everything being "special" for my son (though less so than for your daughter) was classic autistic rigidity: he wanted his room the same all the time, and the only way to control that was to prevent things from leaving it. We also have difficulty with "keeping the box;" we finally made a rule that the box goes in the recycling two days after he gets the toy.

Some posters here have found that rigid kids respond well if they have a predictable starting place, and then are challenged in smaller, more manageable ways. It's a good system if it does turn out that you're dealing with that aspect of autism.

I hope you and your daughter are doing well, she looks like a lovely young person. Please keep us posted on what is going on with her.



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17 Apr 2012, 12:07 am

So sorry to hear about your struggles stareeyedmom. The video actually reminded me a bit of my younger son. Though not diagnosed with anything, his Dad and Grandmother both have OCD. His favorite toys are Hot Wheels cars, and he will spend HOURS lining then up. He gets SO upset when his line is disturbed. He also wants to keep EVERYTHING! Even tonight, he finished his chocolate Easter bunny and when I went to throw out the box, he said "no, Mom! I want to save it!" When I asked why, he said he wanted to use it to make a robot mask. I considered it, but when I looked at the box, there was chocolate all over the inside. So, I said "no, it's got chocolate all over it" and threw it out. He does this with ALL the boxes and wrappers and junk he collects. Sometimes I'll let him keep some for a few days to play with, then I toss it. When we're cleaning out his toy box he will NOT want to throw ANYTHING out (well, maybe one little McDonald's toy from a few years back). So, when he's at school or Grandma's house, I usually go in and throw out everything that's broken or that he doesn't use. He never misses it. If I gave him a choice, yes, his room would be an absolute pig sty.

While my son may not be as extreme as your daughter, just know that you are not alone. Your daughter seems like a very conscientious and imaginative little girl. I know that my son is extremely creative, resourceful, and bright. I'll bet your daughter is very similar. I have a 15 year old son diagnosed with PDD-NOS who was completely different at that age--he did not have attachments to anything, even me.

Hang in there! I'll say a prayer for you and your little girl.



liloleme
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17 Apr 2012, 5:15 am

What sort of self injury and what sort of therapy is she in? Ive see far worse as far as hording. My friend worked for a woman who had an adopted daughter who would keep her bodily fluids (including making herself throw up) in bottles in her room.....now that is a serious problem and is in need of possible medication. Keeping wrapping paper and things like this is hording but I did the same thing when I was little and some of my kids did as well.

Why dont you just open things before you give her her presents, dont even wrap them. I find that my daughter gets over things like this if we remove the things in question. My son gets attached to boxes so we let him play with them until they fall apart, he cuts them up and makes houses out of them and we go in and throw away the parts he cut off and sometimes he gets mad and sometimes he doesnt. He has just learned that its ok, to play with the box but when it gets really torn up it has to go to the recycle place and we will always get more boxes. It gives him something to look forward to.
I mainly buy my kids sensory toys....try Office Playground, they have great stuff. Please dont get angry but It seems like you are making a mountain out of a molehill here. Shes a little girl, I keep things still and Its not a big deal. My husband is a college professor and has about a ton of paperback books. He keeps many of them in boxes as we do not have room for them and fortunately he does not have time to read as much as he used to as I have two dx bone diseases and we believe I have MS now caused my my medication from one of my other diseases. Anyway, I agree with throwing things away. Little by little, when she is at school, ect. If she asks where it went just tell her she can not keep everything or she wont have room for the new "special" things.

Another question I have is, does she play with the toys that these boxes and wrappers come in? If not I would just stop buying her things and, as I said, get her some sensory toys and open them before giving them. Its not a big deal not to wrap presents. My daughter was overwhelmed by wrapping paper so we stopped wrapping her presents for a few years. She was just as happy and did not care. You could also try saying if you give me this special thing, Ill give you this one (a sensory) toy.....if she refuses just say "Ok" and calmly leave her alone. She may change her mind.....you also might look into pet therapy, what these animals do for these kids is amazing. If you want to send me a PM and let me know what state you are in I can look to see if you have therapy dog program.....most help with the fund raising, ect. We just bought my son a bunny and he let his bunny play with the boxes and then after the bunny peed in there a time or two he was ready to dump it.....you can try all these things and more. Also if you get a bunny makes sure it is a male, they are more affectionate and sweet. My son loves his bunny, Shadow, he plays with him every day and its also teaching him responsibility. If you daughter is afraid of dogs or something I recommend rabbits or cats, they are naturally theraputic....or if you want to train your own dogs I strongly recommend that you get the Dog Whisperer DVDs or books....I have two dogs and they were driving me nuts until Cesar Milan taught me how to train them, now they are very smart. My collie even helps me to the door....she sometimes leans on me if my other dog is out there but all I have to do is make a little noise and she stops....she just gets jealous from my other dog. I cant stress enough how much my sons bunny has helped us not to mention my cats and my dogs. If you are allergic...get a parakeet! Maybe tell her that if we empty out the stuff and put it in a box and put it in the attic or the garage where it will be safe you can go to the animal shelter and pick out a special friend for her. If you live in a place where they do not allow animals I can send you something to teach you how to get a therapy certificate that way they have nothing to say. You would have to keep your animal at another place or take it to a therapy training facility.

I have to go to the hospital a lot due to my bone disease. They are traumatic places to be and Im 44 years old. I cry, Ive locked the door on my nurse, I want to go home, I cant stand it there. I understand why your daughter does what she does and all she has to learn is that some things are garbage or recyclable (which may make her feel better, it does me) and other things are meant to keep or maybe give to little kids that dont have toys. I get my kids to get rid of their old toys by saying there are kids who dont have ANY toys and they dont play with the baby toys anymore and a little baby without toys would like it.....this works for my 7 year old classic Autistic daughter but not my 9 year old Aspie son, we just have to remove things slowly so he does not notice. If he does such as the other post....its a meltdown, it does not last forever and if you are calm they will calm down too. Like my 7 year old they may bring it up and you just try to redirect them.

I hope you get your baby home soon....I will try to find your other posts and maybe you talked about the self injury there. My daughter needs to step on a stone every day on the way to school....one day the stone was gone so she had a huge meltdown and I waited and told her that she could step in the hole instead....none of this worked so I took her to school, told her aide to hold on to her....went back to the hole and found the stupid stone that some other kid had pried out and tossed a few yards....I pushed some dirt around it and took her back....still screaming, she stepped on her stone and was happy. The only reason I did this was because it was just this one stone and stepping on that one stone made her feel happy and secure the entire day. By the end of the year last year she stopped, she just needed me to understand and her to decide on her own she didnt need it. The more you harp on things the more they will cling to them. Just like when you tell you teenager you dont like her new boyfriend.

Im sorry you are so upset by this. I do understand OCD and hording....its very hard, nearly painful to give up things. My psychatrist taught me a saying "Its only objects and things, thats all it is and this is all it will ever be". Im an adult and you may need to help your daughter with a shorter saying but it is good to try and stop this now. I am glad that I kept some things. I kept some things from my son who died in August, this kind of made me backslide a little and I would panic throwing things away. My daughter was in a little parade they have at school every year and she looked at the camera and they snapped such a great pic of her....she got some apple juice on her and I wanted to freak out but I kept my head not wanting her to freak out. I blotted the picture, there are some discoloring but only on the bottom, not on her, but I cried about it when she was at school. I also lost all our Christmas ornaments when we moved from California to France. I put them in a box when I took the tree down that year, little things my kids made....junk basically but treasure to me. It still causes me pain that they are gone as he did not pack them and I sent a few people to the house but no one could find them. I dont know what happened to them. I just have to keep telling myself, "they are just things", but its really hard.

I do use 5mgs of valium when I have panic attacks but I dont want to put any of my kids on meds until they are old enough to make that decision themselves because their brains are still growing and we really dont know what these chemicals are doing to their growing brains but if it helps a persons child to be on medication who am I to preach to you. I hope that you get some help and you try to understand why these things are important to her.....ever thought of wallpapering her room with them? I know crazy idea but comforting to her and then just dont wrap things anymore and take things out of the box or whatever they came in. If someone else gives her something....put it on the wall or maybe ask if she could recycle it so people can have plastic cups for picnics or Christmas ribbons.
Good Luck and, as I said, I hope you get her out of the hospital soon. Horrible places!



liloleme
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17 Apr 2012, 5:56 am

Ok, I read your explanation under your daughters video. We have had a lot of things like this happen in our family. My now 19 year old constantly picked at her skin starting around 13 and she has tons of scars on her arms and legs. I still chew my nails and skin around my nails....when I was little I was more aggressive about it to where I would hardly have any nail left.....I wore bandaids around my fingers because it was painful but it did no stop me from taking off the bandaids and chewing more. Its like I was driven to do it....still am but I dont have as many things that stress me out....well lately I do thanks to them adding more and more diseases to the list I have. I have considered suicide but I know what it would do to my kids after loosing my 24 year old son recently. Make sure nothing is going on at school. School was the main stressor for me as a child. I was abused by not only kids but teachers. Chewing on, not only my fingers but everything else eased my stress....still does, probably always will.

My daughter, would tell us she picked at her skin because she saw pimples and then she would say that she did it because she was bored. She still does it in places where people cant see as well. She has Elhers-Danlos syndrome type III (hypermobiity syndrome)....we all do but my doctor wants us to be sent to a cardiologist and a genticist. Its hard because my older daughters live in the US and we are in France. My 19 year old has symptoms of POTS syndrome which is related to EDS. Her skin is very soft and stretchy and she easily scars and has really bad stretch marks just from growing. She has horrible body dysmorphic disorder (she is beautiful) but this still does not stop her from picking and she will get very angry if you say that word.....we call it the P word around her. She has also had bouts of bulimia.

My younger brother has Aspergers even if he does deny it. He went to the dentist as a little boy and he had a loose tooth so the dentist told my brother he needed to go home and work on his teeth. My Mom found him out in the garage pulling out his teeth with a pair of pliers. Did anyone mention to your daughter about teeth needing to come out or anything like that?
Im sorry but I just know how horrible the hospital is and it can make you worse than better. I would do everything I can to try to work this out at home. I am more than willing to help. I understand your daughters feelings and I understand your frustration. My first son had Bi Polar disorder and I did not know what to do to help him and he started using drugs at age 12 and 13 and now he is gone. I had him in the hospital once and I think all it did was upset him more. Some of the kids in there had psychotic symptoms and I think he thought that we believed him to be like these other kids.

I have learned so much with my other kids and from myself. It wasnt until my youngest was diagnosed with classic autism right before turning 3 that the rest of us were diagnosed, aside from my son who was diagnosed a few days after his 12th birthday. Now that I think back maybe them telling him he had a mental illness made him very upset and we were not prepared and did not know what to do or what to say.

Please look into service dogs for autism. Considering your daughter has self injury behavior Im sure you would qualify. Id be happy to help you....I am in France and cant talk to people to save my life but I can write and I am also very stubborn. We post on web boards for help but do people actually offer help? or do they just say....gosh so sorry. Let me know, Id be happy to help you and write to people for you....start a FB page to help raise money for a therapy dog. I just read a story yesterday that reminds me of yours. This single Mother had a son who was constantly hurting himself, threatening suicide at age 8 and had several meltdowns a day.....now that he has his dog he has zero self injury and when he is having a meltdown his dog knows when to try to comfort him and when to just lay next to him until he is ready. They are also helpful for kids who sneak out the door.



stareeyedmom
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17 Apr 2012, 7:23 am

Thank you for the advice :) My daughter does not have bad thoughts about herself. She thinks she is perfect. The self-injury comes from her obsession from being perfect. If she finds a flaw, she takes it off. She tore her whole nipple off a few months ago. This last week, she pulled her big toenail off. She does not feel pain. She also has hallucinations. She won't sleep in her bed because she is scared. She thinks about death all the time. You can't talk to her about getting old.. driving.. living on her own.. ect. She breaks down. She tells me that she sees scary people with knives trying to kill her. She has also became obsessed with her bowels. She loves the smell. Anytime she passes gas, she has to smell it. She licks everything. She wipes her butt with her hand and licks it. She licks cans when we are in the store. She licks everything! We tried to get a dog but she holds them under covers. The dog became mean after a week with her. WE tried and tried to teach her how to treat the dog, but she is just mean to them. She doesn't even understand that she is in the hospital. She never expresses a desire to come home. She never says she wants to come home. She doesn't pay attention to her surroundings. I am on my way to work, but I will read your post more intensely when I get home. :)



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17 Apr 2012, 2:58 pm

One thing stuck out in my mind reading the description under your video. You mentioned she had several strep infections. There is a connection between strep infections and OCD, it is called PANDAS. A child with PANDAS can have a strep infection causing OCD symptoms with no other symptoms of the strep virus. The symptoms of OCD will wax and wain with the strep infections. Take a look at this link.

http://intramural.nimh.nih.gov/pdn/web.htm

Here is a CNN report about it.

[youtube]http://www.youtube.com/watch?v=50bQtkfiHvs[/youtube]



stareeyedmom
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17 Apr 2012, 5:39 pm

I have looked into PANDAS. There is one group of doctors in Arkansas that believe in this. They are about three hours away. I even called and talked to Harvard about it. They said treatment is geared toward children in the beginning stages. It has to be within the first 6 months because it is a fairly new diagnoses. I have still be researching, and looking into that subject though. I so appreciate all the suggestions! The hospital called today. They have added Luvox to her medicine, and took her off Zoloft. So she is taking Risperdal and Luvox. I don't know much about the drug.. Does anyone else??



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17 Apr 2012, 5:58 pm

hyperlexian wrote:
just out of curiosity... why does she have a choice as to whether stuff is thrown away? if it's garbage, why does she have the option to say no?


What happens if you put your foot down and make her throw out something. If she takes it out of the trash, can't you just put it back in? Sure she'd probably take it out again, but you could always put it back in and repeat the cycle until the trashman came. I was always wanting to hold onto things, even things that most people would consider as "trash". My mom let me hoard toys and stuffed animals because I was so obsessively attached to them (I had no friends and my toys and stuffed animals filled that void). But if it was something that was considered trash, no matter how hard my tantrums or meltdowns were, my parents wouldn't let me keep it and would just put it back in the trash can.


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