My dd with OCD has been referred to the Education Welfare Service

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My daughter is 14 and has had this latest bout of OCD for two years now. She showed the same symptoms for a few months when she was in Year 6, but they then went away.

This time they haven’t however and it has really impacted her school attendance.

Her OCD manifests itself as her having to wash her hands a lot, wash her clothes in a certain way (only she is allowed to do this and she will wash them again if I do so much as hang them up) every night before school, spend a long time on the toilet it the morning and a very long time in the shower. No one is allowed in her bedroom and she probably has other “rules” that she keeps hidden.

She is rigid in her thinking, and though it has shrunk her life considerably, she has her routines pretty streamlined now. They massively impact the times she can get to school however, and I have tried all kinds of things to no avail (her Dad moved out in April).

She refused to go to the GP when all of this started and we got her initial referral to CAMHS via her school, who listened to what I was saying and who could see her dry and bleeding hands (her hands are better now as I suppose the skin must have hardened). I also took her to a walk in centre on one occasion, and went to the GP on my own to talk about her.

When she did go to CAMHS, about a year and a half ago roughly or a bit more, she told them she didn’t want to be there or receive CBT, so they discharged her saying that unless she was a willing participant, it wouldn’t work.

Eventually she agreed to see the school counsellor - an Art therapist - and saw her for about 5 or 6 sessions, before deciding to stop.

During this whole time the school has authorised her absence, so there were no repercussions there. I would say they were also a bit slow to act and let her get on with it for a good while.

This Autumn term just gone they took the case up again (I was also keen for this to happen) and, under the aegis of a new EWO, started not authorising her absences. They put in place a reintegration plan but while on some days she did really well, on others she didn’t at all.

So now they have referred her to the EWS, and I have only just received the letter.

This term they have also re-referred her to CAMHS and she is on the waiting list.

The problem with this is that she is EXTREMELY stubborn and will again refuse to go. Going might hopefully help her and will also provide enough medical “proof” for the EWS.

I cannot explain how stubborn she is and how little she takes on board what people say.

So now I am scared that I will be fined (which I cannot afford) or prosecuted.

What can I do if she refuses to go to CAMHS and her attendance at school is still poor?

What other options might there be for her education other than mainstream school.

I was just reading about convictions and scaring myself.

I should add that the letter from the EWS was the opposite or supportive, even though the EWO writing it knows my daughter’s circumstances.

I have the feeling that she does not really believe what is happening. People think that it is as easy as telling someone to stop their symptoms, but it isn’t.

What does she do during the day when she doesn't go to school?

She is just getting ready to go. It takes her a very long time.

I have suggested she has her shower the night before but she refuses.

I think OCD is misunderstood too - people sometimes seem to think that it is lack of parental discipline, or even that the person themselves should be able to control it through willpower.

I did send her a copy of the letter the EWS sent and she just told me she hadn’t read it.

The thing about medication is that she would refuse to take it.

Sorry, I am not saying no to everything.

She also finds social group situations difficult, and had to be excused from PE as she literally could not cope with the performance in front of other people element. Same with music and drama. Hated them but in Year 10 no longer has to do them. Teachers know that she doesn’t like working in groups and is quiet. She used to pace the same circuit around the school during break times, but I don’t know if she still does that. She is bright and could do very well but her attendance gets in the way.

My ex and I do not speak at all - he was emotionally and verbally abusive and the divorce was difficult. He isn’t someone I can talk to about any of this and can be very critical and blaming. At the moment he is more concerned with how sorry he feels for himself I think (though tbf I don’t actually know - he does have a victim stance however).

Sorry, I missed the last few messages. Thanks a lot. I am digesting all of it and will get back.

OP, you say that she is "extremely stubborn" but isn't this part of the illness? the intransigience, the inflexibility, etc. CAMHS would surely understand that and relay it to the school?

I have no solutions, but you sound like you are doing your best and thats all you can do. I find it very hard to believe you would be fined by an education authority for this.

You and her dad don’t speak and he was abusive towards you? I imagine this would be a key thing for her to work through in a therapy session. Was this raised during her art therapy?

Can you spare the money to go towards a private therapist? It sounds as if the problem can’t go away until the OCD is tackled, and the fine from the EWO is probably the least of your worries. I’ve never heard of a parent of an ill child being fined. Especially if she is going to school each day, albeit very late.

It is helpful to be able to reframe her stubbornness in terms of being ill and/or demand avoidant.

I could afford a private therapist maybe once a month, but my Dad could maybe help me. There is still the problem of her complete refusal to take part however.

I know she told her counsellor about her Dad being at times short tempered - I don’t know how much further their conversation went.

I think the problem will be that the EWO doesn’t really see it as an illness.

If you could get her to the doctors and get a psychiatrist assessment of ocd that might help protect you - maybe see doctor on own first to check they can do this or phone and ask them. They can make emergency referrals.

We don't have an Aspergers diagnosis and 95% of staff will accept he has it from his behaviour but if you get the 5% can make life very difficult without proof. I would engage with professionals / senco as much as you can and keep records to cover yourself and get help. SENDIASS maybe able to offer support too.

I have had diagnosed OCD since I was little, so probably over 25 years. I take medication for it now.

The problem with OCD is that I would envisage terrible things that would happen to my family, if I didn’t complete my rituals.

But I was able to attend school and I was able to work through it. I think you need to also ask yourself whether your daughter could be using her OCD as an excuse not to attend for other reasons. Maybe she needs extra support; feels overwhelmed having fallen behind or doesn’t feel she has friends there for her.

It’s really hard, I’ll say that for OCD, people who’ve never experienced it have no idea...but there again school is very important and she shouldn’t be missing her opportunity for an education and a future.

your daughter could be using her OCD as an excuse not to attend for other reasons. Maybe she needs extra support; feels overwhelmed having fallen behind or doesn’t feel she has friends there for her.

I sometimes wonder this too.

I would engage with professionals / senco as much as you can and keep records to cover yourself and get help. SENDIASS maybe able to offer support too.

I will look into SENDIASS.

The thing about Aspergers is that I think she would be upset about this or it being brought up - so I wouldn’t know how to even go down that road - the most that has happened is that two members of staff and I have briefly discussed it.

And I agree about engaging with people. It’s hard though when some of them seem to think it is something I am doing wrong.

The senco should cover ocd too, not just ASD, its any need that interferes with education. To me it sounds more like OCD than Aspergers though needs professional assessment and can have both.

I sometimes wonder this too.

Could you ask for her to be phased back into school? Just do the morning for a few weeks and build it up from there.
Also request her to shadow a really nice group of pupils who will look after her.
You might need to force her back to it, particularly if you’ve allowed her to stay home periodically. She will be upset and angry with you, but you sometimes have to be cruel to be kind, as they say. She’ll get used to it.
Meanwhile that won’t sort the OCD out, only the problem of your DD not attending school. As I said, I had to be put on a fairly high dose of sertraline for the ‘visuals’ to go away, so I could begin to get my rituals under control. Now I only wash my hands three times in a row instead of ten etc

Hi Op- this sounds almost identical to how my OCD manifested in secondary school. I'm 20 now, please first and foremost remember your child is terrified. She's terrified and feeling out of control and having high levels of anxiety, it's no wonder she can't get into school- my shower routine used to take me 2hrs to get ready for school (and would often 'go wrong' so I'd get upset and not want to go in). I still wash my hands a ridiculous amount!😅

CAMHS intervened as my attendance was dropping. Unfortunately because I wasn't doing well with the CBT I was offered I got sicker and developed anorexia. I ended up at 15 in a psychiatric hospital to be in a controlled environment to start medication.

Please explain to your daughter that people out there get it and how does she feel about taking some medicine to feel better- Prozac cleared my head and helped me to realise the thoughts were irrational and I didn't need to do the actions. It took a good 6 months though for me to feel confident enough to go back to school.

I've just come off the Prozac and I am feeling good- mild obsessive thoughts and anxiety but I can override the OCD now.

Be aware that if she isn't attending school, or home education is not an option and not attending CAMHS appointments she may well be sectioned in a psychiatric hospital for her own well being.

I'd suggest talking to the GP and getting a course of an anti anxiety medicine started, that should help significantly- alongside CBT or even just talking therapy this will be incredibly beneficial! I of course recommend Prozac- no side effects for me.

Really hope she's okay and feels better soon x

Worth trying here too:

www.ocduk.org

They have forum for friends and family too.

Ocd can be brought on by bullying / abuse - can be a way of trying to feel safe by controlling things. So could be she was scared of your DH or bullied at school. Still needs same treatment - cbt therapy with or without meds and examining cause doesn't help much unless there's another issue to resolve too. There are books you can buy on it Paul Salkovskis is the best expert in UK. When you have it you believe you or others will only be safe if you follow its rules so would avoid therapy to fight it until you see it as a problem. I never improved with meds but massive improvement with cbt but reoccurs. Avoiding places is common with ocd but its normally places fear are contaminated.

Contact your camhs again. Talk with them about the severity of your dd's symptoms and the level of impact it is having on her life and education and on the family as a whole. Talk with them about her unwillingness to engage (her fear of engaging? Or maybe it serves another purpose for her?) It may be helpful and possible for a camhs worker to come to your home and speak with your dd there.

Is she going in each day, just late?

EWO will not fine you given the context. I imagine this is to try and get your daughter engaging with therapy. Sometimes outside influences can be what the ill person needs.

She goes in most days but often very late - so she will have missed half the day.

Most days- 18/20 days a month, or most days 4/5 days a week?

If it is her rituals making her late, what causes her to miss a whole day?

If it is the former (18/20 days a month) I can’t imagine they will prosecute as what you’re saying clearly matches her attendance record.

Day to day what is your relationship like? Are there any times where she does relax enough to speak to you? You mentioned art therapy- is art an interest of hers?

No really most days. When she has missed a whole day it is because I have put my foot down about some part of her routine which was really getting in the way. She was washing her clothes in the middle of the night literally sometimes for example. So the day after I turned the machine off at night, she didn’t go to school as she had no clothes that she would wear. She was in a real vicious cycle of being very tired, sleeping after school and then getting up very late to wash clothes.

She has missed a few other days in this way - where she “couldn’t” go because she was unable to perform part of her routine.

I thought that they understood what I was talking about at school but maybe not.

Generally though she is there every day, but late.

There are times when we chat and laugh yes, but she never opens up about the OCD.

The school counsellor happens to be an Art Therapist - my dd doesn’t particularly like Art.

She used to have more interests but now mainly stays in her cocoon watching films (this is not what causes her to be late though).

I would say the fine is just a threat to try and jump start CAMHS again then.

If watching films is something she enjoys, is it something she will share with you? Are you able to have discussions with her about the characters and events of the films?

Sometimes she will watch films downstairs or just be downstairs, but a lot of the time she is up in her room. She loves being in bed. I guess it feels safe and cocoon like.

We do chat - she also gets annoyed with me but I guess that’s normal.

Well I would suggest taking these opportunities to ask her about how she sees her future and try and prise out of her a desire to get better.

Teenagers struggle with long term implications of their current behaviour. She is currently missing out on her secondary education and chance to get her GCSEs.

I really hope you can get her to see working with CAMHS/any therapist is essential.

Teenagers struggle with long term implications of their current behaviour. She is currently missing out on her secondary education and chance to get her GCSEs.

Yes this, definitely. I tell her about future implications and she kind of laughs me off. She is kind of pre-programmed into opposing everything I say.

It would be nice to have a more open conversation with her - I will try.