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nevergiveup

How can I help my son

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Hi, I'm new here.. I'm mum to my 15 year old son with OCD. He doesn't have a diagnosis as yet, but he appears to present with contamination OCD (from the various articles I have read and the behaviours he displays). He has slowly withdrawn from family life, the community, and hasn't been in school (due to anxiety/school refusal) for the last 4 years, and has refused to engage with any professionals who have tried to work with him over the same period of time. He has regressed even further with the current Covid-19 situation. I want to be able to help him, but I'm really not sure where to begin as he also has Dyslexia, Sensory difficulties and Social Anxiety, all of which appear to overlap with one another, as well as sleep difficulties (settles between 1-3am in the morning, and wakes between 1-3pm the next day), and eating issues (limited food intake). On top of all this, from his perspective everything is, for want of a better word, 'normal' and nothing is wrong. When I try to talk to him about his behaviours in as indirect way as possible he tends to either shut me down and push me away saying he' busy, or will change the subject of conversation, and sometimes will tell me to stop talking such psychobabble when I mention anything to do with how he's feeling or what he's thinking. How can I help, when he perceives that nothing is wrong? Any help, advice, shared experiences would be very much appreciated x

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Hi nevergiveup and welcome to the forum :)

I'm not sure I can help but your post tugged at my heart strings so I just wanted to say something to you.  I'm really sorry to hear this, it must be very tough indeed. He's a lucky young man to have a mum who is clearly trying to help, he must be really struggling internally with how to deal with this and as a parent it must be heart-wrenching.

I do see some of myself in what your son is going through albeit 30 years or so ago, mainly in the withdrawing from life, although perhaps not quite so extreme, but I did avoid a lot of social interaction and even changed schools last minute which was very difficult for me.   

Some people seem to shut down completely when asked about their mental wellbeing, my Dad is like that and I don't fully understand it but I'm sure it's a coping mechanism and a way of controlling something when everything else seems out of control. 

He obviously needs some professional help and support so I'm sure Ashley or one of the team will point you in the right direction.

Take care 

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Just wanted to add, I have OCD too but am not a parent :)

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Hi OB1

Thanks for welcoming me and for your reply.. much appreciated.. thank you too for your kind words. It can be really hard sometimes, but I try to remain as positive as I can and hopeful that I will help him find a way through so that he feels he can access the outside world again so to speak. It sounds like you yourself had alot your were carrying inside throughout your childhood/adolescent years, although it sounds like you have worked hard in working through your thoughts and feelings. It must have been difficult..

Liam is on the waiting list (again) for CAMHs although I'm not sure when he will eventually be seen. I have been looking into private help/therapy but it's hard knowing what kind of help/therapy to seek. Liam has an EHCP (education and healthcare plan) and through that we've had the involvement over several months of an educational therapist, an occupational therapist and an inclusion facilitator none of which he engaged with. They each worked with me offering tools and resources to try with Liam (CBT, Sensory activities, emotion and resilience tools), but he simply refused by way of closing down the conversation/changing the subject and/or pushing me away. It's really difficult because everything seems so ingrained within him now, I keep chipping away trying to find indirect ways in through fun and laughter, and games/play things he enjoys, but to no avail. I guess at least he's engaging in play with me albeit only via the XBox and on the odd occasion a kick about in the garden. Better than nothing..

It is heart wrenching watching him perform his OCD behaviours/rituals, and struggling with the additional difficulties, and his occasional tears of frustration and I wish he would let me in to help.

Thanks for listening x

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16 hours ago, nevergiveup said:

it sounds like you have worked hard in working through your thoughts and feelings. It must have been difficult..

Yes, sadly like many I didn't get a diagnosis until my late 20's and had no proper help until my 30's and that's been a mixed bag. 

All I can say is keep plugging away and never give up!  Sounds like you are doing all the right things and at some point this hard work will pay off.

Take care 

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Hi nevergiveup :)

I'm sorry to hear about your son. My OCD became a problem for me when I was about 14, and I kept it to myself. For me the main reasons were because of the fear of the thoughts which meant I didn't want to talk about them (for some avoiding talking about them can be a compulsion in itself) and also because I was scared, scared about how my parents would react and what would happen. Not sure if this is the case with your son, but it's an incite into at least how I was thinking :)

OCD-UK have a few resources for young people that might help. Perhaps seeing other young people like him might help him feel it's worth tackling or at least talking about. There's the teen booklet which you can download or request a free copy of here, 

http://www.ocduk.org/teens/

There's also the OCD-UK Young Ambassador's webpage here, 

https://www.ocduk.org/?s=Young+ambassador

There's also the most recent edition of OCD-UK's magazine that's been made freely available due to the current Covid-19 pandemic. 

https://www.ocduk.org/april-compulsive-reading/

The magazine also mentions parent workshops that OCD-UK are hosting (although they are currently delayed because of Covid-19), which from what I can remember are free to attend if you are able to travel. 

Hope some of this helps x

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Hi nevergiveup, 

Not a lot I can add to Gemma's excellent advice and resources. :)

The biggest problem seems to be in getting him to engage with therapist(s), including those he already has. Any therapy he has for OCD also depends on him engaging and it's unlikely he'll make much progress at reducing his rituals until he does. Therefore that's where I'd concentrate your efforts for now, not so much with actual therapy, but getting him on board with the idea he can talk to you safely about anything and nothing bad will come of it. 

A common OCD thought in children with OCD is if they tell anyone their fears will come true, hence the (often extreme) withdrawal. For example if you believe saying your thoughts aloud can make them happen then a thought such as 'Mummy will die' can never be uttered for fear he becomes responsible for anything which happens to you. It seems like a catch 22, but one way in is to explain magical thinking to him. 

All human beings do some degree of magical thinking. Superstitions like unlucky 13 and having to say aloud 'Good morning Mr Magpie' when one bird is seen on its own are obvious examples. What it boils down to is the idea that just thinking (or saying a thought aloud) in some way influences the real world and what happens to us. Utter nonsense of course, but the small twinge of discomfort at taking a chance we experience as logical-thinking adults facing superstitions is nothing compared to the absolute terror and total convinced feeling experienced by the child with OCD.

I would suggest picking a common superstition and chatting about it as a family. Talk openly about how our thoughts can't make things happen and how the superstitious rituals people do don't really protect us even though it feels as though they do. If the chat goes well you could maybe extend it to a form of exposure exercise for all the family. By demonstrating that the rest of you don't worry about these things and you're all ok, it shows him that his fears might not be as absolutely true as he believes. Maybe you could play a game where you all have to do something that counters a supertition - spill some salt and not throw it over your shoulder, walk under a ladder (or pretend to walk under the ladder playing snakes and ladders), do something on the 13th of the month without fear of it going badly etc. Every family has heard of one or two superstitions even if they don't abide by them personally, so pick ones he is familiar with or has heard of to start. If he engages with the game you can each introduce a magical thinking thought you had and relate how you feared something bad would happen but actually your thoughts had no influence on the outcome. 

Snakes and ladders game might be a bit young for him at 15, but I'm just trying to explain how to help him start engaging with therapy. I'm sure you'll have your own ideas which will be personalised to his interests and will therefore work better. You'll also know if he's able to cope with a family game (which doesn't single him out as 'the one with the problem') or whether he'd respond better to quiet one-on-one chats. That's your call.

Good luck. :)

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Thank you OB1, Gemma and Snowbear 🙂

OB1 I hope you won't mind my asking, but was your late diagnosis due to you feeling unable to speak to someone about it/withdrawal from life? (Sorry if I've not worded that very well x)

Thanks for the links Gemma I've started to have a browse through the info and also the magazine, there's so very useful help/info. It was also helpful to understand from your perspective why my son perhaps avoids conversation etc, thanks x

Ands thanks Snowbear for the ideas on how I might be able to try to engage with Liam regarding his difficulties, so that even if he still feels unable to talk about his thoughts within the family, if we gently continue to talk about/discuss these sort of things in random conversation then it might just help in planting a seed of hope and help him to eventually feel able to talk about it (hoping that makes sense). 

Thanks again..

Just another thought in relation to my son's sensory difficulties, could this be contributing to his OCD? Or perhaps exist alongside OCD? He really struggles with the sensory side of things for example he mentioned yesterday that he want to borrow my toe spacers (for when you paint your toenails to separate your toes) so that he doesn't sweat between his toes because he doesn't like it, and he mentioned not liking it when his armpits sweat? It appears like a combination of sensory and OCD because I'm aware of his dislike of his own and others bodily fluids and them touching/coming into contact with him (if that makes sense) x

 

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On 02/05/2020 at 14:13, nevergiveup said:

 thanks Snowbear for the ideas on how I might be able to try to engage with Liam regarding his difficulties

And apologies from me, nevergiveup, for thinking he was much younger when I suggested snakes and ladders. I should have revised what I'd written once I realised instead of carrying on. :blushing: But I figured you'd get the gist and adapt for a teenager!

On 02/05/2020 at 14:13, nevergiveup said:

Just another thought in relation to my son's sensory difficulties, could this be contributing to his OCD?

It's not uncommon for young children with OCD to complain of discomfort around some physical sensations. For example, around the time my OCD started (age 7) I found the labels at the neckline of clothes unbearably itchy and disturbing and got extremely upset if they weren't cut out. I also found loud and high pitched noises unbearable. But rather than being either a symptom of OCD or contributory factor, I believe the sensory distress and the OCD were both symptoms of an underlying difficulty interpreting and dealing with my emotions. This is common in children on the autistic spectrum in particular (and without wanting to add yet another label to those Liam already has) it's possible his sensory disturbance and social anxiety also fall under the broad umbrella of 'the spectrum'. 

Most children naturally learn to interpret and control their emotions as they get older just by copying their parents, but for those who struggle there are ways to help. I imagine this falls under the remit of the educational therapist? (Or at least she ought to know about it from her training to point you in the right direction.) It can be as simple as naming the emotion for the child and chatting about how we deal with that emotion in normal healthy ways. (Apologies again for I'm talking about the pre-teen age group here)  'I can tell that you're feeling xxxx. When I feel like that I do...to make myself feel better.' 

Not liking sweat could be related to disgust feelings over body fluids in general, or it could be contamination (dirty) thoughts related, or it could be the wetness itself. It depends how he interprets it. eg. the sweat makes me dirty (therefore a bad person) or sweat needs washed off and washing means hours of rituals that he'd rather avoid. If it's disgust related talking about the normality of sweat (even explaining sweaty armpits as a sign he's becoming an adult so it's a milestone to be proud of) could help.

One thing you can be doing as a parent is to try to improve his bedtime/morning routine. That is 100% habit and changing it won't be detrimental to his OCD in any way. It should even improve his mental health if you can get him onto a better routine. Research has proved teenagers do have slightly different body clocks to the rest of us and benefit from getting up one hour later than normal, but that is only one hour, not the half a day most teenagers try to make it! Also recommended is to avoid screen time for an hour before bed (TV, computer, phone.) Electronic devices all emit blue light which tells the brain to stay awake. Reading old fashioned paper books doesn't have the same problem so can be a good pass time if he's awake late at night. Then it's a matter of enforcing the same bedtime each night and getting up at the same time each day - even if he complains of lying awake in bed for 3 hours and lounges on the sofa all morning. (Get him on the computer games straight after breakfast so the blue light tells his brain to wake up!)  It can take a few weeks for the body clock to shift, especially if the habits are longstanding, so you do have to persevere in the face of opposition. Good luck with trying though. :) 

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Hi everyone, I'm new here. i have a 19-year-old son showing a lot of similar traits to Nevergiveup's son. He has been diagnosed and is on medication and therapy. My main concern is the amount of time he spends in the bathroom, up to 3-4hr at a time every day. He maintains some of this is due to issues with his bowels and has to sit on the toilet for ages. Now he's on meds for that too. My concern is that he thinks there's nothing wrong with spending this much time in the bathroom. At the moment, his life consists of bathroom and playing on a games console. Nothing else. I am very worried. Any advice would be appreciated. Ali

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