Ship of Fools: OCD in the family

Thread: OCD in the family Board: Oblivion / Ship of Fools.

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Posted by Lamb Chopped (# 5528) on :

I'd like to ask for insights from anybody who has OCD in the family--not medical advice, thanks, but rather what it's like to live and cope with it at least semi-effectively. LL has given me permission to ask you folks about this--he's newly diagnosed and just starting treatment. I should say that I had fairly mild OCD for several years as an adolescent, although I seem to have grown out of it.

Right now we're having a hard time coping, because whenever his frustration levels go up, or his anxiety, the OCD goes to new heights. And since most of his "things" involve checking with me, or constantly rephrasing what he wanted to say (so as not to be wrong), I'm getting a bit worn down.

Posted by Mr Curly (# 5518) on :

It appears that Middle (our 14yo) has just self-diagnosed with OCD, and told us by sharing a short story he'd written for school about a boy who had OCD but kept it secret. In other words, we had no idea.

He's had a couple of counselling sessions so we're very much at the start of the journey.

mr curly

Posted by Jengie Jon (# 273) on :

Given your love of reading, you might like to get The Book of Lost Things. If I recall correctly the hero suffers from OCD.

Jengie

Posted by Kitten (# 1179) on :

I second the recommendation for 'The Book Of lost Things', my son is an OCD sufferer and found it helpful

Posted by Lamb Chopped (# 5528) on :

Thanks, I'll go digging for this!

Posted by Caissa (# 16710) on :

How does LL's OCD manifest itself?

Posted by Lamb Chopped (# 5528) on :

We don't have much in the way of physical rituals so far. We have mental and speech rituals instead. Like,whenever he gets frustrated or anxious (all the time, then) he starts asking me repeated questions about whether something is "safe." As in,"If I touched the outside of that bottle of household cleaner and then ate with my hands, is that okay?" (Repeat ad infinitum for various medications, anything to do with the dog or the birds, anything that ends up in the trash or recycling--such as used typing paper, etc.) He knows perfectly well what I'm going to say, and he knows the absurdity of worrying over it. But he can't help himself asking anyway, even the eleventy-millionth time. And if I don't go along with the script, he gets upset.

He has intrusive repeated thoughts, mostly four letter words or things to do with sex (yay) which as a 13 year old he is made very uncomfortable by.

He is a bit better off when it comes to religious stuff, as we are Lutheran and have spent his whole life hauling him away from any form of legalism in favor of grace. But he still feels the need to check daily to be sure that grace is still real, and still applies to him. Thus questions about whether we/God still love him in spite of [insert minor annoying characteristic of the day here]. Fortunately, he does take my word for it. But he needs to have that word renewed daily.

I'm pretty much enmeshed in the rituals he has built for himself/had imposed on him by this horrible disease. Asking me for reassurance is the psych equivalent of washing his hands repeatedly. And I'm trying not to feed it--trying to break the mold of the ritual as much as I can--by turning the question back on him, and having him voice the answer which he already knows. He really dislikes this, but will usually go along with it, and end up with the reassurance he wants by a different route.

I'm hoping that eventually he will be able to answer those worries internally (using his own perfectly good knowledge and memory) or to take them to God himself in prayer. There seems to be a bit of movement there, as he is now asking us to pray together.

I'm going to be asking the counselor at his appointment today what specifically I should be doing.

Posted by lilBuddha (# 14333) on :

He may well have other types of unbidden thoughts. Thoughts/fears of violence and death are not uncommon for compulsives. These thoughts do not mean there is any desire to commit violence or see anyone harmed, but it can be difficult for the brain to completely accept that this is an uncontrolled response rather than a real desire, even when one is aware.

Posted by Gill H (# 68) on :

'Overcoming OCD' by David Veale and Rob Willson may be helpful.

The cover is bright orange with the title in big letters, so you may wish to buy the kindle version if you read in public a lot...!

Posted by piglet (# 11803) on :

quote:
Originally posted by Lamb Chopped:
... He has intrusive repeated thoughts, mostly four letter words or things to do with sex ...

IANAD but has he been tested for Tourette syndrome? The third paragraph of the link suggests a possible connection between Tourette's and OCD.

I hope your counsellor can find some answers for you.

[Votive]

Posted by Lamb Chopped (# 5528) on :

The pediatric neurologist finds nothing particularly wrong with him (the tics were at their height when he saw him, but the OCD had not yet kicked in). The school we left a couple years ago said "autism," which I did and do think is bullshit. That is however the carryover diagnosis we're stuck with educationally until the new school reviews his case in a year or two. Since it's not affecting his schoolwork there is no felt urgency about a re-evaluation.

I'm tending to think "weird" is the best diagnosis, myself (in my family "weird" is a term of endearment and describes all of us--I doubt any of us are neurotypical, though most of us don't have diagnoses). But the OCD is pretty clear, and the tics have almost wholly died away.

Had our meeting yesterday, and got asked to track LL's compulsions around bedtime so as to have a benchmark. LL was surprised to see about fourteen on the tracking sheet--he was guessing four or five. This is why it takes him an hour and a half to get ready for bed!

Thanks for the book recommendation--got to add it to my reading list!

[ 01. October 2014, 16:28: Message edited by: Lamb Chopped ]

Posted by Doublethink (# 1984) on :

It is quite common for ASD, OCD and Tourette's to occur together. It is also quite common for diagnoses to swing between OCD and ASD at the able end of the spectrum.

It matters because the treatments for the conditions are different.

Posted by Lamb Chopped (# 5528) on :

So I understand--and other anxiety conditions as well. And maybe ADD?

I wish we were at a point scientifically where we knew more about this stuff. It feels like shooting in the dark.

Posted by Tree Bee (# 4033) on :

Get professional medical help ASAP.
His questioning will pull you in and infect you too. Be strong and don't play along. (He does know he's being irrational, and that's frightening for him.)

I've been there.
He has had help and is now free. I'm left with all sorts of tics I didn't have before.

Posted by Lamb Chopped (# 5528) on :

He is getting professional help, thanks. Is there anything you or other people can tell me about coping with the day to day challenges?

I mean, it takes him 90 minutes to get ready for bed. That's because the reassurance compulsions kick in when he's tired, and huge amounts of time are wasted reminding him to brush his teeth etc. every time he wanders in to tell me another worry.

In another vein, he has a math teacher this year who is all in favor of mathematical puzzles--you know, things like "Using no other number but four, and using exactly FOUR fours, create expressions that equal up to the first twenty integers, both positive and negative." He gets extremely frustrated with such things, because he's being graded on them and mere intelligence and hard work don't help much. At which point he goes into anxiety meltdown and every tic or compulsion he's got come pouring out. That can't be good for your school social life!

Is there anybody out there who is handling these daily life kinds of issues? (another example: what do you do when your OCD child goes on a youth retreat and the youth director decides everyone is going to do an activity that involves getting your hands messy, and not being able to wash them until much later?)

That's sort of the wisdom I'm hoping someone might have for me. Also, how far do we go with disclosure? As in, Should I tell his teachers? The youth director? etc. etc.

Posted by Doublethink (# 1984) on :

FWIW I would tell selected staff etc, expecting them to maintain confidentiality - but then they can make some reasonable adjustments where possible. Also, to avoid him being punished for being ill.

Posted by Athrawes (# 9594) on :

I'm with Doublethink on this. You really need to talk to his maths teacher and suggest either alternative assessment or being able to work on these problems in a different way, possibly with more time, or with a partner. A degree of flexibility is needed when teaching kids with these sort of issues. I teach kids with ASD, ODCD and anxiety, although not OCD, but the principle is the same. Make adjustments to suit the child in front of you so that they can succeed. I hope that helps.

Posted by Lamb Chopped (# 5528) on :

Thanks, got a meeting with his teachers on Wednesday. Any more helpful ideas? (rubs hands together)

Posted by nobody but me (# 18084) on :

I have experience of a loved one with severe OCD and times he lashes out at me verbally and perhaps that happens to you too. My best advice is to not take it personally but also to not play along with the OCD. Medication might help. My friend is allergic to SSRIs which are used against OCD but has been greatly helped by taking 5HTP, others have had success with Inositol and St Johns wort. Make sure you have someone to vent to, OCD is very draining for everyone. Regarding therapy, it might be an idea to focus on one compulsion at a time but I'm not a therapist so don't quote me on that. It is easy to start censoring yourself so as not to trigger stuff and to some extent it is reasonable but don't let the OCD have to too much of a say.

Posted by Tree Bee (# 4033) on :

quote:
Originally posted by nobody but me:
I have experience of a loved one with severe OCD and times he lashes out at me verbally and perhaps that happens to you too. My best advice is to not take it personally but also to not play along with the OCD. Medication might help. My friend is allergic to SSRIs which are used against OCD but has been greatly helped by taking 5HTP, others have had success with Inositol and St Johns wort. Make sure you have someone to vent to, OCD is very draining for everyone. Regarding therapy, it might be an idea to focus on one compulsion at a time but I'm not a therapist so don't quote me on that. It is easy to start censoring yourself so as not to trigger stuff and to some extent it is reasonable but don't let the OCD have to too much of a say.

This.
As regards telling people, in our situation he was ashamed of his behaviour and afraid that he was going mad. So we didn't tell anyone. It was an effort to get him to see the GP hence my first comment, sorry if it was inappropriate.
But he was an adult so the situation was a little different.
I would have loved to talk to someone about how to cope. I wish the ship had been around then!

Posted by Lamb Chopped (# 5528) on :

Thank you!

Listening to you all, I'm so glad my son trusts me enough to tell me this stuff. I never dreamed of telling my own parents, and they don't know to this day that I had OCD for several years.

Posted by Doublethink (# 1984) on :

Online forums can help folk feel less alone with this stuff: Try this.

Posted by Aravis (# 13824) on :

Have you ever watched "The Big Bang Theory"? If you're not familiar with it, one of the central characters obviously has some OCD features, which makes him a brilliant physicist but a very frustrating flat mate and neighbour.
I just wondered if watching a comedy programme would help to relax the discussion a bit, and let him see that although OCD is difficult and inconvenient to live with, there are other people out there with the condition and some of them manage to do very well in life. You might want to watch them yourself first though - at least some of them are certificate 15 I think.

I really don't know if this is a good idea or not, but am interested to know what you think.

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