MHinAus

And there in lies the skill of a good therapist. One who knows how to engage and build trust with the child and talk in a language that they understand so they feel heard and want to help themselves. I hope that can happen for him ...

Thanks SB, I’ve asked the therapist the question before about having her own children and she doesn’t. she has also spent a lot of time in the US where I hear they are not as enthusiastic about cognitive therapy as some other countries. maybe she is working off those beliefs and background. Im therefore trying hard to work with my daughter on teaching her the cognitive side also so she understands better when we are having to not accommodate her compulsion of avoidance. It’s so hard as she doesn’t like talking about it for long and then when we are having to be strong and not get sucked into her circle of anxiety she just feels we are being cruel and mean by not helping her. Its almost a race to get her to understand the way ocd works and how it’s best treated and why we do what we do, whilst at the same time actually doing some levels of ERP with her before she fully understands the theory but having to try and move forward. Getting dressed for school is a huge issue but we obviously can’t wait to address that as it’s so important. However that’s near the top of her anxiety ladder so struggling to proceed at a gentle pace with some easier ones first. i have found a couple of great books aimed at explaining ocd and CBT to a child that I would totally recommend to other parents of kids under 12 who want to explain it to their children in a great way. The challenge is getting their attention and understanding but also their willingness to learn about it so they recognise when the ERP part is started that they get why it’s being done that way and that we are only doing it to make them get better. Without doubt the hardest part of having kids with ocd - getting their understanding and buy in to CBT The books I really like and would recommend to other parents with children with OCD - ‘Can I tell you about my OCD’ - Amita Jassi (short but perfect to explain ocd to child sufferers and their family, teachers, doctors) ‘What to do when you’re brain gets stuck’ - Dawn Heubner (a kids guide to overcoming OCD with great practical examples) ’Breaking free from OCD’ - Jo Diersley, Isobel Heyman, Sarah Robinson and Cynthia Turner (CBT guide for young people and their families)

Hi all, I have another long thread explaining my daughters symptoms which are based around her inability to touch certain things that she needs to use for everyday activities. Plates, cups, bowls, knives, forks, spoons anything touched by certain other people like beds, clothes, seats etc. Her compulsion is to simply avoid all these things to the point where she struggles to eat, drink, sleep anywhere but the floor, wear any clothes that have to be washed (basically leaving only brand new clothes which she won’t then take off). Everyday basic human needs really. It is extremely complex We have been seeing clinical psychologists and psychiatrists for past year and their assessment is that is is very hard to understand her exact symptoms but they believe they are a combination of OCD, anxiety around separation, emotional behaviour issues. They believe this makes it hard to define a clear treatment plan and have to play it by ear so to speak. They want us initially to work on the circle of security (COS) and then CBT i don’t think this is a bad plan at all but I am concerned on the proposed strategy the plan is to to work 95% with the parents only teaching us how to do this with her. That is important but they don’t plan on working directly with her on a weekly basis with a set CBT course. i would expect to see some cognitive therapy with her where they help her understand ocd, how it works and what the process to recovery is. We can obviously do this too, and are, but I think it has more credibility coming from a specialist also so we all speak the same language . The therapist said to me that for an 8 year old it’s more like BT only as the C part of CBT is not useful for an 8 year old As too young to benefit or fully understand. I disagree and feel they are missing out on a crucial component that will help her understand why we will do certain things with her when helping her face her fears. Getting an 8 year old to participate in ERP is hard enough but more so if they don’t understand why they are doing it this way it would also mean that if they don’t work one on one directly with her themselves we will have to do all the exposure response prevention activities. I realise we would do this on an ongoing basis but surely the therapist should be doing this with her too to build up her confidence, gain trust and explain it all to her. is it normal that when treating an 8 year old for OCD with CBT that they only teach the parents what to do and don’t work directly with the child doing it too? what are others experience with a therapist doing CBT with young children or just getting parents to do it after teaching us the methods? surely it needs both?

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

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

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 ... 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? 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. 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. 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. 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.

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 ...

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

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.

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

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