8 yr old unable to perform basic human needs

[MHinAus]

Hi everyone,

this is my first post on here so hello all and hope you're all having a good day.

Im the father of an 8 year old little girl and desperate to be able to make sense of what is happening with her. 

Like most OCD's they take a long time to describe the symptoms and do it justice and hers seems especially unusual as I've not seen or heard of a similar one yet.

im hoping someone on here as seen something similar and can provide some guidance.

Her symptoms have become so severe that we are now unable to help her in any of her normal human needs.

they have been getting steadily worse but this week have become so devestating our only next course of immediate action is hospital.

her issues are all around touching things that she believes will lead to something terrible happening to her. Fears of family being cruel to her, abandoning her etc.

it started with certain things around the house but has got to the point where she won't wear any clothes, refuses to eat off any plates and other crockery, can't use cups and glasses etc, won't sleep in a bed, use blankets, use a toothbrush etc. The list goes on and on.

we are stuck in our house as can't take her out, she cant go to school, and will only drink water out of a bathroom tap. She will go a whole day without food because she just 'cant' touch it. Night time is so sad as she will only sleep naked on the floor and often without any blankets.

we can do nothing to persuade, bribe or threaten her as she simply doesn't care about the consequences. As sufferers know, you may as well ask them to jump into a fire then face their fear.

as you can imagine we are at our wits end and scared for her and what her life is now and will stay as. Eating and drinking is obviously a massive current problem right now and we have no choice but to hospitalise her to overcome that immediate problem.

we have lost our little girl and feel we are simply unable to help her perform any of life's basic needs any more..

she is an intelligent little girl, understands her anxiety and her compulsions are to simply avoid touching any of the 'things' that provide her fear. Her world has become impossibly small.

we have been seeing a psychologist and psychiatrist for a year but made no headway at all. They say they haven't seen such a severe case with a child that age and simply seem out of their depth. It doesn't help that she won't tell us what her fear is or willing to face any of her fears in CBT. It makes it almost impossible to help her at the moment. 

We are trying to find someone who is an expert in OCD with children and knows how to work 'with her' and not just the parents. Sounds simple and obvious but finding the right person who 'gets it' is a massive issue.

we are exhausted, deflated, scared and feeling helpless as parents and just want to see our little girl lead a normal life. 

It feels a long way a way at the moment.

i know everyone on here has their own issues they are dealing with on a day to day basis and I wish you all the best.

if anyone has heard of a similar type of OCD and how you dealt with it would love to hear from you, especially in a young child who lives in the moment only and isn't willing to face any of her fears yet.

thank you for reading and all the best to you all

 

Edited September 1, 2017 by MHinAus
Typo

[PolarBear]

Hi MH and welcome to the forum. 

I have not heard of such an extreme case in someone so young. That is truly perplexing. Usually it takes years for symptoms like this to develop to such an extreme.

But, she is at this point and you have to deal with it. That's the reality, as painful as it must be. 

If I were you I'd be contacting every therapist, psychologist and psychiatrist in the country looking for help. Maybe you have done that already. Someone out there can help your child.

I'd stop threatening her. It won't work and will only serve to isolate her from you. 

Have you tried telling her the reality of the situation? Like if she doesn't start eating and drinking regularly that she will end up in hospital where all sorts of things will be touching her? I'd tell her matter of factly and answer any questions she has.

Right now is say the most urgent thing to do with her, short of getting her to eat, is to get her to open up about the thoughts. What is it that has her petrified about touching things? This needs to be handled delicately. One suggestion is that you could sit her down and calmly explain that you would like to know what it is she fears so you can help her. Tell her it's okay to tell her anything, that you will love her no matter what. Then sit there quietly and let her decide if she is going to tell you. Give her about ten minutes. If she says nothing, thank her for her time, end the session, letting her know she can try again tomorrow. And do it tomorrow. Give her a special time when the floor is hers to talk about her thoughts.

If and when she opens up, congratulate her on doing so. Tell her it must seem scary but she did good to tell you. 

Let her have the time. Outside a small reassurance at the beginning that you love her, that you want to help her and that she can tell you anything, stay silent. Don't forget. Don't look sad or angry. Just give her a special time to open up, when she feels ready.

I'm sure others will chime in with their thoughts. Stay strong. Somehow you can get through to her and she can get out of this.

[MHinAus]

Ho Polar Bear,

thank you for your response it's much appreciated. 

All your ideas are great ones and of course we have tried every tactic we can think of. We regularly have quiet calm chats about her OCD when the mood is right and being an articulate child can sometimes make some headway. At the moment I'm trying to help explain to her that the thoughts she is having do feel extremely real to her but that is just the OCD lying to her to make her convinced they will happen. Although she is not keen to talk about that I can tell she's absorbing the information. 

The problem lies in the fact that from day one (been going on for over one year now but getting worse daily), she simply will not tell us what her fear of happening is. She says she will never tell anyone and is totally stubborn and will not cave in. We do know she's scared for herself and not others though but not what she believes will happen. 

We have spoken to her about the reality of the situation and although she understands the consequences of everything from not seeing her friends, not being able to enjoy things outside the house, even hospitalisation nothing is strong enough to over power her fears . She simply accepts the outcomes and doesn't seem able to try and face them. 

Her stock answer to do anything that is required is 'I cant' . It's not even up for debate and the more we rests the less chance we have. 

Me and her Mum are separated which makes things much harder too as we have the added complexity of our own time when she is with us. Without going into too much detail, the current situation is when with me she can eat at my house with a couple of her own plates and cutlery but cannot use anything to drink from. She's started drinking orange juice from a bowl with a spoon!

she now also feels she can no longer sleep at my house and when I try and reassure her it's all ok and she needs to stay with me as it's our time together she becomes histerical and the whole situation is incredibly traumatic. Almost like I've kidnapped her. It's so incredibly sad as forcing her to stay is appalling and I'm worried our very strong attachment will become damaged and her feeling of safety and security will be diminished .

at her mums, she can't eat at all but will sleep there. There is no consistency to her symptoms which makes it impossible to treat at the moment . 

Important to note that we both have very strong relationships with her and she loves coming to both of us. Also in the past when we have got her out and about her symptoms seem less and she seems able to do things she wouldn't do at home. It's as if she knows she has to use the plates in a cafe or a friends house as there are no other choices.

as of today she has been in the same school clothes for 2 weeks. And I mean at night time also. It's cold here at the moment so keeping her warm when dressed inappropriately is also a big issue.  She hasn't been to school though as been unwell with flu - hardly surprising.

however when telling her we need to wash those clothes she has said that once we do she will nothing she can wear at all. She already won't wear socks and shoes so we are held at ransom and that if we take those clothes off she will be naked as she will refuse to put anything else on. We have been there before and she just sits around in a blanket. However now she won't touch the expensive warm blanket I bought recently so no idea what I will be able do to look after her.

i could go on explaining all the different scenarios but there are so many. 

We try everything, she knows how much we love her as we give her constant love and attention. She knows we want to help her and she wants it to go away but she is just unable to try to do any of the things she fears.  An adult sufferer will acknowledge they need to face some fears to progress and may be willing to do this but a child simply can't see past the current moment and doesn't see the big picture. 

We know if we take her to hospital they will just ensure she is hydrated and eating again which won't be an issue for her there and then send us on our way again.  I forgot to say she is now also refusing her medication which means she is going cold turkey. What can we do here? You can't hold down an 8 year old and try and squirt medicine into her and explaining the importance has become meaningless to a child who just doesn't see or consider the consequences of anything anymore  

She is currently being reassessed (if we can get her out the house dressed again), as the therapists didn't do it properly the first time at start of the year as they would only see her if she was dressed. But I know what the outcome will be. More work with the parents on strategies that simply aren't working and hardly talking to our daughter.  Surely CBT even with a non complying 8 year old is the only way to make sme headway? I thought it was the skill of the therapist to find a way to gain trust and break through with the child in a way that they do even realise what  Is happening.  

We are two loving parents that are both exhausted and frustrated beyond belief to what is happening and just don't know what to do. We both speak everyday at length about it and have a good relationship in that regard. 

She simply has total control of everything and we seem unable to persuade her to do what is required.

trying not to buy into her compulsions is almost impossible when it comes down to everyday human needs. How do you tell a child that unless she eats off a normal family plate she won't have her lunch . Fine once but then what happens at dinner etc. before yo know it she hasn't eaten in a day. we are stuck between trying not to feed her OCD and make sure we keep our daughter fed, hydrated, warm, clean, dressed etc...it's a nightmare situation  with no end in sight.

we are also on a waitlist to go to a place for 4 nights where the whole family goes and stays. we will be observed and advised on how to handle everyday situations. Sadly, being out of her real environment won't show how bad it is. Better than nothing though I suppose but I doubt the clinicians will be experienced enough in child OCD to help much beyond the normal simple statements they expect to work.  Also just been told this won't be until December now when we are at crisis point. The fun continues!

With all the chaos we face every minute of the day, every decision point that comes up the reality is we face a child with severe OCD who isn't mature enough yet to be able to fully understand the illness and want to participate in ways to make her better. 

She is on meds (or was until refusing to take them), sees a psychologist and a psychiatrist who are trying but we are going nowhere quickly. On top of all this we now have her school suggesting they should file a report to family services for a risk assessment meaning it will go on her record forever. 

We could not be trying harder than we already are and both parents are close to a break down. For uneducated people to then suggest we are not taking care of our little girl instead of helping us find a way to treat her is something else we have to deal with  

it's all so sad and we just want our little girl back and be able to lead a normal life

thanks for listening..that alone can help a little 

 

 

 

 

[Gemma7]

Hi MHinAus

I'm not sure I have much to add to PolarBears great advice but I wanted to say that I've read your story and I feel so much for you and your daughter. 

Your daughter sounds very severe for someone of her age but I do believe that she can get better. It is often around the age of 8 where most sufferers experience there first signs of OCD but unfortunately it looks like your daughter is just a little ahead of us. CBT is an excellent therapy when applied well but with your daughter being young it may just take a bit longer for her to understand why she should change and most importantly that she isn't responsible for bad things happening. When she gets a little older you might find she starts to 'get it' so try not to lose hope. I know that things are hard at the moment and that will provide little comfort.

What you describe about how she compulses less when out in a cafe etc. shows that perhaps there is a reduction in her sense of responsibility. In research they have shown that people check (a common compulsion) less when they feel less responsible for something bad happening. This is just an observation that might help you understand her behaviour a little.

Also, you said she won't now touch an expensive warm blanket you bought her. This doesn't suprise me, when I was really unwell the more I wanted something the more my OCD made it feel impossible to have. If you try to get her to touch clothes or a blanket try not to make it sound too nice because OCD likes to ruin things we want the most. Obviously this is just for the time being and worth a try.

Have you looked into any self-help material designed for parents with children who have OCD, it may be worth a try. Maybe there are some techniques that might help. Also, there's a storybook called Frankies Foibles that I've heard is good about a little boy with OCD, your daughter may identify with the character.

I wish I could be more help but try your best to look after yourself, because you need support just as much so you can support your daughter in her fight.

Gemma

[PolarBear]

MH, I really feel for you. I've been doing this for years, suffered myself for 40 years, recovered.. . Ive never heard of such an extreme case in someone so young. 

I'm going to do some thinking on this. A quick fix answer isnt going to cut it. Ill get back to you.

[MHinAus]

Thanks Gemma and PB,

it really means a lot that youve taken the time to read and respond. THANK YOU!

ashley has suggested a book called 'can I tell you about my OCD' which I am waiting to arrive. I am also watching and reading as much as I can to educate myself on the illness. It breaks my heart watching some of the stories on the videos and so amazed by the strength of all the sufferers and families who deal with it everyday.

cetainly trying to look after ourselves too to have the strength to go on but that's easier said than done with the huge amount of emotions and time to help her. I lost my job earlier in the year due to missing so much time and still trying to find time to get more work. Her OCD feels like a full time job though so not easy. Also have an operation myself tomorrow which I have been told could be stress related which I could do without right now.

Anyway, my thoughts are with my daughter first and foremost. I feel this week is a critical one as I'm meeting her psychiatrist tomorrow for her second assessment. He has awful bedside manner and no idea how to talk to an eight year old so should be amusing ...especially how we should get her to start her meds again. Can't wait to hear his methods there!

we also realise now that we won't be able to get her to school.  She is home today because she can't wear any socks or shoes. She will miss her first camp on Thursday too which is such a shame for her. She has stayed with me during the day for whole weekend and going home to mum every night. Not a good solution but she sleeps there and will eat with me. This can't continue though as 'my time' with her ends tomorrow  for a week or so, therefore her mum will have to deal with her unable to eat there.  It's not the food (although she likes my food better ?) but the plates, bowls, cutlery etc she has to eat from. At my house she is happy with a couple of plates and bowls etc that are just for her (for now anyway). 

I didn't say that her older brother is a 'chosen target' as far as what she can touch. She once said that she 'selected' him as the person to focus on as she could not choose mum or dad as that would be too hard. So she can't touch him at all and anything he has touched either. This started with sitting on his bed, then her bed because he has sat on it, to clothes that have been on her bed, etc. etc.  eventually it's almost everything and why is happens mostly at our two houses. It just snow balls ...  however this is not consistent and things that have never been touched by him or in any way traced back to him are also avoided.  I wish it was one thing as we could just focus on that. For instance I had her painting yesterday and now she refuses to wash her hands even though she wants to help cook dinner (ironic for OCD isn't it). She has also developed a habit of sitting on the floor (couches have been off limits for months) and pushing into her stomach like she is trying to push things back. It's not weight related or hygiene related. She has no rituals either as her compulsions seem to just be avoidance. 

Thank you for your advise on less responsibility outside the house. I don't think it's that but I will think about it some more and see if there may be something there. It feels like she is controlling every thing in her life by choosing what to avoid and when but realise it's the OCD just controlling her. 

Thanks for advise on her favourite things being the hardest to touch because ocd wants to take away things that mean the  most. That's a great insight and one which will help me understand it better.  

I realise this is going to be a very traumatic and long experience and just want to be able to make some headway before she gets much older and starts to get teased and labelled by others not understanding of this ****** illness ( that's about as polite as I can be on this horrible monster).  

Thank you again for taking the time and your words of encouragement. I already feel less isolated and have some hope things will turn around at some point - they simply have to as impossible for her to live this way. 

 

 

 

 

[BelAnna]

12 hours ago, MHinAus said:

Thanks Gemma and PB,

it really means a lot that youve taken the time to read and respond. THANK YOU!

ashley has suggested a book called 'can I tell you about my OCD' which I am waiting to arrive. I am also watching and reading as much as I can to educate myself on the illness. It breaks my heart watching some of the stories on the videos and so amazed by the strength of all the sufferers and families who deal with it everyday.

cetainly trying to look after ourselves too to have the strength to go on but that's easier said than done with the huge amount of emotions and time to help her. I lost my job earlier in the year due to missing so much time and still trying to find time to get more work. Her OCD feels like a full time job though so not easy. Also have an operation myself tomorrow which I have been told could be stress related which I could do without right now.

Anyway, my thoughts are with my daughter first and foremost. I feel this week is a critical one as I'm meeting her psychiatrist tomorrow for her second assessment. He has awful bedside manner and no idea how to talk to an eight year old so should be amusing ...especially how we should get her to start her meds again. Can't wait to hear his methods there!

we also realise now that we won't be able to get her to school.  She is home today because she can't wear any socks or shoes. She will miss her first camp on Thursday too which is such a shame for her. She has stayed with me during the day for whole weekend and going home to mum every night. Not a good solution but she sleeps there and will eat with me. This can't continue though as 'my time' with her ends tomorrow  for a week or so, therefore her mum will have to deal with her unable to eat there.  It's not the food (although she likes my food better ?) but the plates, bowls, cutlery etc she has to eat from. At my house she is happy with a couple of plates and bowls etc that are just for her (for now anyway). 

I didn't say that her older brother is a 'chosen target' as far as what she can touch. She once said that she 'selected' him as the person to focus on as she could not choose mum or dad as that would be too hard. So she can't touch him at all and anything he has touched either. This started with sitting on his bed, then her bed because he has sat on it, to clothes that have been on her bed, etc. etc.  eventually it's almost everything and why is happens mostly at our two houses. It just snow balls ...  however this is not consistent and things that have never been touched by him or in any way traced back to him are also avoided.  I wish it was one thing as we could just focus on that. For instance I had her painting yesterday and now she refuses to wash her hands even though she wants to help cook dinner (ironic for OCD isn't it). She has also developed a habit of sitting on the floor (couches have been off limits for months) and pushing into her stomach like she is trying to push things back. It's not weight related or hygiene related. She has no rituals either as her compulsions seem to just be avoidance. 

Thank you for your advise on less responsibility outside the house. I don't think it's that but I will think about it some more and see if there may be something there. It feels like she is controlling every thing in her life by choosing what to avoid and when but realise it's the OCD just controlling her. 

Thanks for advise on her favourite things being the hardest to touch because ocd wants to take away things that mean the  most. That's a great insight and one which will help me understand it better.  

I realise this is going to be a very traumatic and long experience and just want to be able to make some headway before she gets much older and starts to get teased and labelled by others not understanding of this ****** illness ( that's about as polite as I can be on this horrible monster).  

Thank you again for taking the time and your words of encouragement. I already feel less isolated and have some hope things will turn around at some point - they simply have to as impossible for her to live this way. 

 

 

 

 

Wow, what an absolutely awful situation for your daughter and your whole family. Things will change over time and they will get better with the right treatment. Are there any specialist OCD centres in Australia? In the UK there are a couple of specialist centres that provide in-patient treatment for the the most severe cases of OCD, including treatment for kids and if that was a possibility then it sounds like the best possible option at the moment. There are probably some complicating factors surrounding concerns for her family, which might well be better away from home than when she is stuck in the house.

I have been reading through this thread and trying to work out what you could do to get around some of her immediate/most severe problems if hospital is not an option, for example could you wrap up the food bowl that she eats from at your house and hand it to her Mum so that she can eat at her Mum's house? (or would it become 'contaminated' by being in the car with her brother?). Could you send your daughter (in her unwashed school clothes if necessary) to a grandparent or extended family member's house for the day and see whether her behaviour differs there and whether they can convince her to eat and face some of her fears? (you said that she does tend to do things when she knows she has to [i.e. away from home]). Is there anything that she really loves doing (perhaps going to the cinema or bowling or to McDonalds, which might work as a bargaining trick- e.g. if she puts on clean clothes then she can do something that she loves (or have you already tried everything like that?). 

Also it is worth noting that sometimes SSRIs can actually make OCD worse. This can happen when starting on a new medication or increasing or decreasing dosage but sometimes the particular SSRI is just not the right one and worsens the OCD. 

Thinking of you all! 

 

[MHinAus]

Hi BelAnna,

thank you for your kind words and suggestions. It's much appreciated. 

Like you thought, we have tried pretty much everything but she is amazingly stubborn and not willing to attempt things at the moment. 

Using crockery from my house at her mums won't work as it just seems that being in that house causes problems. It's not a hygiene issue. I also want to avoid reinforcing her fear that she's right not to use plates at her house and mine are ok.

Actually last week I had made her a school pack lunch which she saw me pack and dropped her off at her mums as she was taking her to school that day (hopefully). She was unable to get her to school though so she stayed home and refused to eat there. I told her mum I had packed the food which was in her school bag and she liked everything in there and would eat at school or my house. I said just give her that during the day. Of course she refused to eat it there and said that her mum had made and packed it even though she knows that was not true as she saw me do it!

Wearing clothes are her hardest thing to do in the ladder of severity. Her mum took her on a holiday a couple of months ago overseas. She was dreading it and ended up buying loads of new clothes for her because sometimes she is ok with new stuff for a while. She was desperate for a break and just needed to her her there. With our daughters agreement she purchased new tshirts, skirts, shorts, swimming costumes, underwear etc.. she ended up wearing the same swimsuit the entire time including on the plane, in the water, out the water, resteraunts, bed. She says she thinks she can do something and then can't. It's costing us a fortune. 

At the weekend I had to take her out with no shoes on around the supermarket as simply no food to feed her. She hasn't been brushing her teeth for ages so I managed to get her to agree to choose a toothbrush. Took 5 mins to select the one she wanted. So far so good I thought. Of course once home she wouldn't even take it out the packaging and said she couldn't do it. 

Its exhausting and expensive and she seems to just have total control over every situation. 

Taking her to a relative in the hope she will change clothes won't work.

She would eat there though and probably use any crockery as no other option. 

She eats with me but only off certain crockery. 

No longer eating at all at mums. 

In fact just received this text from mum whilst I am typing this note

"Can I drop her while I take her brother to the bus stop for school. She needs to eat. She is wild today and wants to come to you"

Loud exhale. The day begins and was hoping to get some relief through yoga in the next hour. No chance now

 

gotta run

thanks again everyone for your ideas. I really mean that

[BelAnna]

23 hours ago, MHinAus said:

Hi BelAnna,

thank you for your kind words and suggestions. It's much appreciated. 

Like you thought, we have tried pretty much everything but she is amazingly stubborn and not willing to attempt things at the moment. 

Using crockery from my house at her mums won't work as it just seems that being in that house causes problems. It's not a hygiene issue. I also want to avoid reinforcing her fear that she's right not to use plates at her house and mine are ok.

Actually last week I had made her a school pack lunch which she saw me pack and dropped her off at her mums as she was taking her to school that day (hopefully). She was unable to get her to school though so she stayed home and refused to eat there. I told her mum I had packed the food which was in her school bag and she liked everything in there and would eat at school or my house. I said just give her that during the day. Of course she refused to eat it there and said that her mum had made and packed it even though she knows that was not true as she saw me do it!

Wearing clothes are her hardest thing to do in the ladder of severity. Her mum took her on a holiday a couple of months ago overseas. She was dreading it and ended up buying loads of new clothes for her because sometimes she is ok with new stuff for a while. She was desperate for a break and just needed to her her there. With our daughters agreement she purchased new tshirts, skirts, shorts, swimming costumes, underwear etc.. she ended up wearing the same swimsuit the entire time including on the plane, in the water, out the water, resteraunts, bed. She says she thinks she can do something and then can't. It's costing us a fortune. 

At the weekend I had to take her out with no shoes on around the supermarket as simply no food to feed her. She hasn't been brushing her teeth for ages so I managed to get her to agree to choose a toothbrush. Took 5 mins to select the one she wanted. So far so good I thought. Of course once home she wouldn't even take it out the packaging and said she couldn't do it. 

Its exhausting and expensive and she seems to just have total control over every situation. 

Taking her to a relative in the hope she will change clothes won't work.

She would eat there though and probably use any crockery as no other option. 

She eats with me but only off certain crockery. 

No longer eating at all at mums. 

In fact just received this text from mum whilst I am typing this note

"Can I drop her while I take her brother to the bus stop for school. She needs to eat. She is wild today and wants to come to you"

Loud exhale. The day begins and was hoping to get some relief through yoga in the next hour. No chance now

 

gotta run

thanks again everyone for your ideas. I really mean that

I'm so sorry, it sounds like such a desperate and distressing situation for all of you.

Your daughter will be feeling terrified all of the time (and I'm sure her behaviour is pretty unbearable because of it) and you must feel so helpless, worried and just plain exhausted? 

Has there been any progress with securing treatment? Are there any specialist OCD units that could take her for in-patient treatment? She obviously has incredibly severe OCD and hospital treatment might really help especially if she receives specialist treatment. 

It honestly sounds like you have tried everything so I hope that you can get some outside help! 

 

[snowbear]

Hi MH,

What you're describing with your daughter isn't that uncommon and although she's been described as 'a severe case' there really is no such thing OCD-wise, just someone whose symptoms are severely impacting on her current life.  I'm a little surprised that the child psychologist you've been working with hasn't seemed to 'get it' as interpreting behaviour is right up their street. Anyway... 

The good news is this form of OCD is perfectly treatable with CBT once you understand what you're dealing with and approach it in the right way.

 

On 01/09/2017 at 05:48, MHinAus said:

we can do nothing to persuade, bribe or threaten her as she simply doesn't care about the consequences. As sufferers know, you may as well ask them to jump into a fire then face their fear.

It doesn't help that she won't tell us what her fear is or willing to face any of her fears in CBT.

 I'll try to give you some insight to what (I believe) your daughter is going through. 

The seeming lack of care for consequences and unwillingness to engage in therapy makes more sense when you abandon the notion her behaviour is about an unwillingness to face her fear.  Scrap that whole 'text book' concept of OCD and let's start over. 

OCD is usually described as 'intrusive (unwanted) thoughts, and compulsive behaviours aimed at preventing the bad thought from happening.'

With the type of OCD your daughter has it's more accurate to describe it as:

Unwanted feelings, and behaviours which attempt to undo the disaster that has already happened.

Her unwillingness to touch things is referred to as 'mental contamination' and is about avoiding strong emotions associated with certain people. Ask the professionals you've been working with about 'mental contamination' and see how clued up they are!

 

Quote

The problem lies in the fact that she simply will not tell us what her fear of happening is. She says she will never tell anyone and is totally stubborn and will not cave in. We do know she's scared for herself and not others though but not what she believes will happen.

Put simply, your daughter is in survival mode. When you ask her what she's afraid of she scrambles for words to describe it because realistically she knows she's sitting in your house, but she feels she's hanging off the edge of a cliff. At 8 you don't have the ability to articulate that kind of abstract analogy so you go along with the adult's suggestions that maybe you're thinking something bad. But it's got nothing to do with what she's thinking. She's responding to her survival instinct at an emotional level. 

Worrying about her not eating or wrapping her in a blanket to keep warm is like daddy leaning over the edge of the cliff and asking 'Are you cold, aren't you hungry?' She's got bigger priorities just now (hanging on by her fingernails), so it's little wonder she seems not to care about these less important survival needs and is prepared to do without.

Inside she'll be screaming 'Yes I'm starving, yes I'm cold, help me daddy, please' but at the same time she can't explain it in terms of being scared to let go of the cliff face to take the hand you're offering. She doesn't think that's she's hanging from a cliff, it's just a feeling of life-threatening disaster that she ca't work out how to fix so she stays silent and appears stubborn in her refusal of help.

Sometimes CBT for OCD focuses too heavily on ERP (exposure response prevention) and tries to enforce the expected behaviour. For her that's the equivalent of someone leaning over the cliff saying 'You have to let go. Trust me, crashing into the rocks won't hurt as much as you think it will.' 

The right CBT approach is the equivalent of, 'Take my hand. It's ok to let go. Trust me to help you climb up and not let you fall.'

Getting her to engage in CBT is about the therapist offering the right kind of rescue. (One that speaks to her emotions rather than her brain.) Nothing more complicated than that.  

You mentioned your house and her mum's house so I'm guessing you've separated. That's a potentially big upheaval in a child's life which takes some coming to terms with.  It's important not to read any criticism or blame into that suggestion.This isn't about blaming someone for her situation and her behaviour isn't a direct response to anything her parents have or haven't done. This is about how she feels and the emotions she is struggling to process. It's quite possible her emotional turmoil isn't even related to the parental split at all, but something else entirely. I'm just looking for clues in the information you've provided and putting it together with where she appears to be emotionally. 

Whatever the event(s) that triggered this, the thing she fears has already happened. She's just stuck in survival mode trying to work out how to cope with the intense emotions it's created. 

Related to what Gemma said about OCD keeping you from the things you want the most, the unwanted feelings she's getting don't have to be bad feelings in themselves such as fear or anger. They're often about depriving yourself of something good as a kind of self-protection from losing it again. (love, safety, happiness.)

 

On 04/09/2017 at 05:22, MHinAus said:

I didn't say that her older brother is a 'chosen target' as far as what she can touch. She once said that she 'selected' him as the person to focus on as she could not choose mum or dad as that would be too hard.

Makes perfect sense. When you're 8 there's a limit to how much you can 'protect yourself' from losing your care givers love, whereas the love of a brother isn't paramount to survival and is sacrificable. Doesn't mean she loves any one of you more or less, or that she hasn't still got a strong bond with every family member. 

 

On 02/09/2017 at 23:23, MHinAus said:

She simply has total control of everything and we seem unable to persuade her to do what is required.

I'm going to suggest persuasion maybe isn't the right approach.  

For practical advice it helps if you remember, 'she feels unsafe, how can I make her feel safe?'  Of course she's not thinking 'I'm unsafe' so reassuring her with words won't have any measurable impact. You need to communicate with her feelings which is easiest done by making suggestions and reviving memories associated with the feelings you want to create. 

So, for example, you might she her shivering and remind her of how daddy used to tuck her up at night and make her safe. You could ask her if she'd like you to tuck her into the big blanket and read her a story. Doesn't have to be bedtime, doesn't matter if you've not read her a story since she was much younger. It's about seeding an idea, allowing her to make the connection between being safe and warm in the past with a choice to feel that way again in the present. 

Same with the toothbrush. 'But you've got to brush your teeth' is a very different message to 'Remember how good it felt when your teeth were squeaky clean. Maybe you'd like to feel that good again?' and then unobtrusively set the toothbrush in its packet where she can reach it and walk away, leaving her to make the connection and choose the behaviour for herself (if she's ready to.) The bigger a deal something becomes to the adult the bigger the risk feels to her and the less likely she is to choose it. 

There will be a sort of logic behind the various 'can'ts'. Mum is perhaps more associated with happy mealtimes so eating at her house may feel particularly unsafe, where daddy is perhaps less connected with emotional memories around food and more connected with emotional safety so sleepovers are a problem at his house. Not that she'll be more than vaguely aware of this kind of 'logic' at best, so it's best to take things at face value and just accept what is rather than go looking for explanations.

I hope that gives you an insight to her behaviour and feelings, along with some practical ideas on how to approach the problem. Keep in touch and let us know how you're all getting on.  

[PolarBear]

Love the analogies, snowy, though I don't quite agree with your opinion on severity. That's for another thread.

[MHinAus]

Thank you Snowbear for such a detailed message with great insight, suggestions and emojis ?

I shall look in detail tomorrow as night time here now and I've been in surgery today so feeling a bit vague and ready to sleep  

Some good news though in regard to the 4 night stay in a facility where the whole family goes to be observed and behaviour guidance provided for the parents. We were down for December (after applying 8 months ago) but due to our urgent situation we are going next week now. 

"Coral Tree is a state wide tertiary referral service for children with mental health concerns. The child's family is conceptualised as the unit of treatment, with interventions geared towards assisting families with behavioural and relationship difficulties."

the above describes what they do so certainly not specific to OCD and unsure what skill level that have in that regard but this is as good as we can get here at the moment and the change of environment might break the current downward spiralling cycle and give us some new ideas. 

We also had a good session yesterday with her therapist who actually spent time just with her. It's going to take a long time for her to gain her trust and open up but it's a start and she approached things well.  Maybe I was a little harsh on her to start with but no progress in 8 months made me feel that way. The reassessment they are doing is another attempt to begin again. This our last stab in the public system and if things don't progress well we will be looking elsewhere. 

On first reading I liked a lot of what you suggested and will consider this in more detail. The cliff analogy is a really good one!

Some quick answers to your questions - yes her mum and I are separated but live very close and work well on this together. I am currently in the old family home as her mum has had another child with a new partner and moved out when we separated. Not sure if memories of happier times in the family house are an issue for my daughter but I do know she loves being here and we always have wonderful times together in between any OCD issues. 

Thank you so much for your concern, time and knowledge, all these correspondences are so helpful and insightful and extremely appreciated  

?

will check back in soon with updates ...

 

[snowbear]

14 hours ago, PolarBear said:

 I don't quite agree with your opinion on severity. That's for another thread.

Yes, lets not derail MH's thread, but I look forward to that discussion.  

[MHinAus]

I've had time to look over in detail the feedback and really think there is some amazing insights into your observations and advice. Coming from sufferers themselves really help in understanding what she must be going through so thank you so much for taking the time to help us ???

Im realising all the time that improving knowledge on OCD is vital to being able to help her and I'm getting so much benefit from everyone's knowledge and experience. 

I do have some observations and questions though on some of the feedback to help me understand better ...

 

On 06/09/2017 at 07:36, snowbear said:

OCD is usually described as 'intrusive (unwanted) thoughts, and compulsive behaviours aimed at preventing the bad thought from happening.'

With the type of OCD your daughter has it's more accurate to describe it as:

Unwanted feelings, and behaviours which attempt to undo the disaster that has already happened.

This is really very interesting and seems to describe her better.

what do you see as the differences between intrusive thoughts and feelings and what is their relationship?

you stated that the disaster has already happened. Can you explain that a little more. Is she therefore remembering the pain from the disaster, or fearing it will occur again?

without knowing what her fear is how can we know that she's already faced it?

 

On 06/09/2017 at 07:36, snowbear said:

Her unwillingness to touch things is referred to as 'mental contamination' and is about avoiding strong emotions associated with certain people.

This is also very insightful and makes sense. Where it gets confusing is that the certain people keep changing and they can be off limits and then ok again. No rhyme or reason but this is ocd!

for instance right now she struggles to have any physical contact with her mum or little sister. This is fairly new and unsure why and obviously distressing for them both. 

 

On 06/09/2017 at 07:36, snowbear said:

Put simply, your daughter is in survival mode. When you ask her what she's afraid of she scrambles for words to describe it because realistically she knows she's sitting in your house, but she feels she's hanging off the edge of a cliff. At 8 you don't have the ability to articulate that kind of abstract analogy so you go along with the adult's suggestions that maybe you're thinking something bad. But it's got nothing to do with what she's thinking. She's responding to her survival instinct at an emotional level. 

Worrying about her not eating or wrapping her in a blanket to keep warm is like daddy leaning over the edge of the cliff and asking 'Are you cold, aren't you hungry?' She's got bigger priorities just now (hanging on by her fingernails), so it's little wonder she seems not to care about these less important survival needs and is prepared to do without.

Inside she'll be screaming 'Yes I'm starving, yes I'm cold, help me daddy, please' but at the same time she can't explain it in terms of being scared to let go of the cliff face to take the hand you're offering. She doesn't think that's she's hanging from a cliff, it's just a feeling of life-threatening disaster that she ca't work out how to fix so she stays silent and appears stubborn in her refusal of help.

Sometimes CBT for OCD focuses too heavily on ERP (exposure response prevention) and tries to enforce the expected behaviour. For her that's the equivalent of someone leaning over the cliff saying 'You have to let go. Trust me, crashing into the rocks won't hurt as much as you think it will.' 

The right CBT approach is the equivalent of, 'Take my hand. It's ok to let go. Trust me to help you climb up and not let you fall.'

Getting her to engage in CBT is about the therapist offering the right kind of rescue. (One that speaks to her emotions rather than her brain.) Nothing more complicated than that.  

 

I love this analogy. You have really educated me on how to talk to her now. This is so meaningful and she definitely responds to emotions rather than logic. 

 

On 06/09/2017 at 07:36, snowbear said:

Related to what Gemma said about OCD keeping you from the things you want the most, the unwanted feelings she's getting don't have to be bad feelings in themselves such as fear or anger. They're often about depriving yourself of something good as a kind of self-protection from losing it again. (love, safety, happiness.)

Again this is very interesting to know and does make sense. OCD is so cruel!

will make sure I don't build certain things up too much else they will end up being off-limits pretty soon. 

 

On 06/09/2017 at 07:36, snowbear said:

For practical advice it helps if you remember, 'she feels unsafe, how can I make her feel safe?'  Of course she's not thinking 'I'm unsafe' so reassuring her with words won't have any measurable impact. You need to communicate with her feelings which is easiest done by making suggestions and reviving memories associated with the feelings you want to create. 

So, for example, you might she her shivering and remind her of how daddy used to tuck her up at night and make her safe. You could ask her if she'd like you to tuck her into the big blanket and read her a story. Doesn't have to be bedtime, doesn't matter if you've not read her a story since she was much younger. It's about seeding an idea, allowing her to make the connection between being safe and warm in the past with a choice to feel that way again in the present. 

Same with the toothbrush. 'But you've got to brush your teeth' is a very different message to 'Remember how good it felt when your teeth were squeaky clean. Maybe you'd like to feel that good again?' and then unobtrusively set the toothbrush in its packet where she can reach it and walk away, leaving her to make the connection and choose the behaviour for herself (if she's ready to.) The bigger a deal something becomes to the adult the bigger the risk feels to her and the less likely she is to choose it. 

We do spend so much time telling her she is safe and loved and changing that to bring in suggestions and reviving happy memories is a great idea too. Will certainly try that approach more. 

Even the simple change of phrase around using the toothbrush is a great idea. 

I totally understand that when the parents get more anxious about doing certain things she is less likely to do them. That's a change of approach for sure and a big challenge especially when around basic human requirements like eating and hygiene. As a parent we just want to take care of those needs but it sounds like we have to choose our words very carefully and not make such big deals out of them all the time (at least openly)  

 

Thanks again guys. We are really benefitting from this terrific forum and gaining valuable insight into how her mind could be working which allows us to consider our approach even more. 

[snowbear]

19 hours ago, MHinAus said:

what do you see as the differences between intrusive thoughts and feelings and what is their relationship?

Maybe the simplest explanation is to give an example.

An intrusive thought might be something like: 'I can't touch that plate or mummy will die.'  The idea pops fully formed into your head, with object and outcome both already clear and linked. What you fear is obvious to everybody, including the sufferer. 

An unwanted feeling would be fear (even terror) when the plate is seen or mentioned. Typically there wouldn't be any accompanying thought about the plate, just a feeling in her gut that it signifies danger or something bad. The sufferer might have little or no idea of exactly what they fear will happen, just a gut instinct that something is badly wrong and there's danger afoot. (That includes adults as well as children.)

However if you asked her why she couldn't touch the plate she would then be forced to rationalise why it scared her.   This might result in a thought such as 'Something bad is going to happen if I touch it. Hmm...what's bad enough to make me feel this scared... maybe mummy will die!' The reason she comes up with to explain her fear might not reflect what she was originally thinking at all, because she wasn't thinking about why the plate was scary - just feeling that it touching it would be bad because it was somehow 'contaminated' with bad feelings. 

Asking an 8 year old to explain their mental contamination feelings is a losing battle. World specialists and professionals have only started to get their heads around it in the last 15- 20 years.   If they've struggled to find the words to describe it to other professionals you can imagine how hard it must be for your daughter to put words to her feelings.  

 

Quote

you stated that the disaster has already happened. Can you explain that a little more. Is she therefore remembering the pain from the disaster, or fearing it will occur again?

No. She's not remembering a specific event, or fearing something specific will happen. 

She's reacting to how something she has already experienced has made her feel. 

There doesn't even have to be one 'event' behind it. It can arise out of a million tiny, seemingly unimportant things, like a drip effect over time. But if each tiny incident is interpreted by the child as evidence that their world is falling apart then the result is this feeling that she is unsafe.

When things become 'contaminated' by bad feelings it's the child's attempt to put some kind of logical explanation in her own mind to the feeling she can't explain. Adults have taught her that you don't go near nasty, dirty things and there's not much that's nastier and 'dirtier' than the bottom falling out of your security blanket. So the sufferer reasons that the things they feel uncomfortable about must have something to do with germs and not touching. 

'Contamination' or 'germed' (as I called it when I was 7) is just the nearest analogy we humans have to explaining emotional 'dirt'. 

 

Quote

without knowing what her fear is how can we know that she's already faced it?

That's easy - by her behaviour.  

As CBT begins to take effect she'll either understand that bad feelings towards something doesn't mean you have to avoid it

OR

without understanding fully why she'll get drip fed the message that she's safe after all, the contamination will disappear by itself and her behaviour will gradually return to normal. 

But as you've discovered, verbally telling her she's safe is water off a duck's back. Just as she originally made the interpretation her world was falling apart based on the behaviour around her and the feelings that produced, she'll do the same in recovery. This is why you need to 'talk to her feelings' and get the message across through your behaviour. (Trust what I do, not what I say.)  

 

[KSS]

Hello MH,

i am also new here, but what you write about your daughter sounds so familiar to me I felt I had to post just to let you know that you're not the only ones going through something like this.  I see you've been offered some help at a facility and I'd love to hear how that works for you.

My daughter has just turned 10 and she has had OCD symptoms since about age 6 or 7, I would say.  Difficult to pinpoint as it crept up on us and for a long time we didn't know what it was.  Things got significantly worse about a year ago, when she broke her foot and could no longer hide her avoidance or compulsions and her fear came out as aggression.  As parents our natural reaction was to discipline what we saw as unacceptable behaviour (violence, shouting, rudeness, refusal to do basic things) but this only made things worse.

Like your daughter she has fear about touching things and has never been able to articulate her bad thoughts so what snowbear says really makes sense.  For a long time she wouldn't touch cutlery, or would wash it under running water for several minutes first.  She spends most of her time in the house with just knickers on as she won't wear clothes, and is mostly in her bed.  She does still go to school (most days) but can get through several changes of clothes before she leaves the house.  For a long time she wouldn't touch her shoes, and persuading her to put them on could take a very long time and she still wouldn't do them up (she now has shoes that don't need doing up).  She won't touch most things in the house and if something inadvertently touches her or something of hers she goes into meltdown.  Like you a lot of this was directed at her sibling which makes it particularly sad.  She would have nothing to do with her sister and treated her appallingly to avoid her, but even worse than that, her dad and I tell her sister what she is and isn't allowed to do based on what we know will trigger the OCD (e.g. don't sit there, don't walk there, don't touch that).  The list goes on and on as I'm sure you know.  The OCD and her behaviour control the household.  We reached crisis point several months ago when it was taking 3-4 hours to get her out of the house to school and the violence meant I had to physically restrain her, sometimes for up to 2 hours. She sometimes showered in all her clothes and shoes and floods the bathroom many times.  She was also suicidal.

Some things have improved lately which I think is down to a number of things.

1. We all understand better what we are dealing with. My husband and I have done a lot of research into OCD and I have also got books aimed at children and she has read these and we have talked about it together.  When she is not being controlled by the OCD does seem to be able to understand quite a lot, and I think her growing up is helping her understand herself better too.

2. We have also changed / lowered our expectations. E.g. instead of insisting she comes to the dinner table to eat with the family we would let her do it on her own terms, we allow her to use her tablet far more than normal as she can 'zone out' with that which stops her noticing things which upset her, instead of nagging her to get out of bed to do something with the day we let her decide what / when to do.  This has improved our relationship with her and she now opens up much more about what triggers her OCD, which helps me understand and make some allowances / avoid in anticipation (I know this is accommodating the OCD and the wrong thing to do but it gets us through the day). 

3. She now plays computer games with her sister and they have forged a virtual relationship through the games. They don't need to touch each other, but can still interact. Over time this seems to have helped with their real relationship too. She will allow her sister closer to her and they sometimes play together although this is still rare and she normally needs to shower after.

Although a lot of this seems to be accommodating the OCD, it is also allowing her to be in control of tackling it and she does do lots of things by herself now.  She doesn't like me to notice or mention it at the time as it makes it harder for her, but when we talk every night I tell her that I noticed that she picked up her bag, or touched the light switch, or opened a drawer, or sat on the swing etc etc etc, and that it must have been hard for her and that I'm proud of her.  She really appreciates this and it gives her a boost.

One tip around teeth cleaning - she would also never do this, but allowed her dad to every night. We did manage to get her to the dentist recently and they used disclosing solution on her to show her all the plaque build up. We bought some disclosing tablets to use at home and this is enough motivation for her to clean her own teeth again to scrub away all the purple!

We still have some really bad days, but the violence and outbursts are much less.  We are on a waiting list for CBT from the NHS since January (8 months) but still waiting and no indication of when this might be.  We keep on going as best we can, muddling through as parents and trying not to let the OCD get worse and control our lives anymore than it already does.

i really hope you found your stay in the facility helpful and wish you all the best with finding something to improve your daughter's and your lives.

 

[MHinAus]

Hi KSS,

thank you so much for taking the time to write about your own daughters experience. This is certainly the closest to anyone else I have heard about. I'm so sorry for what your family is going through as I fully understand how completely heart breaking, frustrating and exhausting it is. I smiled when you said that you sometimes just have to do whatever you need just to get through the day. Only because I understand your feelings.  Avoiding accomodating their needs when their requirement is everyday eating, drinking, wearing clothes etc. is so hard to do all the time and I too sympathise on how hard that is to do regularly even though you know it's wrong.

I've just got back down stairs from putting her to 'bed' for the night and ready to finally relax. Unfortunately it's hard to relax knowing 'bed' for her is leaving her in leggings and tshirt that she has had on continuously for over 2 weeks and are appallingly filthy, actually curled up on my bedroom carpet floor with no covers or pillow. Just a small heater blowing out hot air so she doesn't freeze during the night. ?

You sound like your daughter has many similar symptoms and I think the best way that was described to me in this thread was mental/emotional contamination. Look that up as I'm sure that is what this is.  However it's only a name and it still needs to be treated. 

She got home from the 4 night stay in the hospital where the whole family stayed. I was not included but that's another story. 

We had hoped for some real guidance and strategies to solve specific problems but it sounds like it was mostly a very lengthy assessment of her. They were also confused on what her main problems were but we did get some ideas from them around trying not to get drawn into her circle of anxiety. She has become so sophisticated over the past year of avoiding her fears and dragging us into her circle of anxiety by getting us to help her that it's going to be a huge battle breaking that cycle especially when she doesn't want to face any fears yet. 

They also spoke about TAKE CHARGE moments (i.e. it’s no longer about following her need, but requires us to be Bigger and Stronger, whilst still maintaining some KINDness)  this is important in setting clear expectations on certain things, planned ignoring (when she tries to drag us into her avoidances by negotiating, bargaining etc.) and Using consistent consequences for more serious misbehaviour (e.g., time off an activity, Time Out for aggressive behaviour).

They also want us to start exposing her to things she wants to avoid but in a controlled fashion but I still think they need to work with her on her own more to build trust and understand what's driving her behaviour first. She also needs to understand it too and be more ready to participate in any of that work. Right now it's all just 'I cant' as to her it's just her secondary concerns and no one is helping her with her 'major' fears (her survival mode). I agree her age of 8 is a big factor still as just not ready to challenge herself yet. However that world of hers is getting smaller by the day and it's hard to see where real specific progress will come from in the short term. 

Like you guys, understanding OCD in much more detail is hugely important and reading books, articles, this brilliant forum, etc. is crucial to be able to speak the right language with others but also more importantly how to speak to them and help explain it. it's a slow process with one so young but one we realise will be required for a long time yet. 

i would like to share more with you and be a support to each other with some help on what we have both found that works but not sure whether sharing personal email addresses in the forum is accepted?

Anyway, I wish you all the best for the coming days as I know just getting through each one is an achievement.

in fact one thing the clinicians did say in their report that I liked and applies to everyone on this forum was:-

"Remember, this is a marathon not a sprint, so be kind to yourselves and celebrate your efforts, not just successes!"

Take care and all the best

[MHinAus]

I should also add the advice provided during the weekly stay was to be very positive, loving and caring with them. They need to feel secure and safe. It sounds like we are all doing that but it's important to really emphasise that with them and appeal to their emotions. Some examples below:-

Protect me (i.e. keeping her safe from harm)

Comfort me (e.g., showing a kind, reassuring face, being present with them, cuddling them. Having 'family' routines and predictability such as playing games before bedtime even if the day has been difficult.

Organise my feelings (using Emotion Coaching principles, such as saying “I wonder if it’s worrying for you when I ask you to do this”, or “I’m guessing you might feel bit annoyed or betrayed at the moment”, and making sure you avoid asking questions like ‘how do you feel?’ or ‘why do you feel like that?’. Being curious rather than judgemental is key I believe.

It’s key also to consider your own emotions at these times, and whether you need to more actively manage these so you can be an effective emotion coach to her).

Delight in me (just looking at her like she’s the best thing since sliced bread, or valuing being with her even if she might be feeling a bit uncomfortable or upset).

 

All sound ideas that we need to incorporate into our everyday of being with her.

Drip feed the right messages. love and security