I won't be able to do this

[asdx2]

Ds's second appointment with the psych at CAMHS this morning. He was stressed before we got there, partly because he hasn't come down from Friday's anxiety but also because dd was loud and lively because she was happy that ds was here when she got up as he's normally left for school.

So a review of the medication first, no side effects now so I was hoping that the dose would be increased a little (he only takes a quarter of the minimum dose 1.25ml) because it is only just taking the edge off the anxiety not really touching it tbh.Ds however wouldn't agree to an increase mainly because he doesn't like the taste so couldn't face taking more so it will stay as it is.

Then came the CBT discussion, Jack has too much on at the minute with school and exams and the prospect of moving to a new school so I felt it would need to wait until exams etc are out of the way but because of the waiting list the allocation referral has to go now. So we agreed that on the proviso that ds could change his mind if he wasn't ready.

Then he says it will involve the whole family Now we all love ds dearly and as a family we work well together to support him BUT none of us would be up for family therapy to be quite honest. The three oldest are adults (Dd1 is 18 this week) and would refuse. Dh wouldn't go because he doesn't do talking, that leaves me ( I like to work things out my way) ds and dd2 (also autism and won't comprehend what they want anyway)

I am a control freak, I can't bear the thought of somebody interfering in our lives, I don't want ways that work for us to be put under scrutiny and changes suggested just because they are more conventional or politically correct.I can just imagine what they'd think to my house rules that are non negotiable ds's eating and sleeping habits and the methods that work for us as a family.

I would move heaven and earth to address ds's anxiety but I don't want our whole lives under scrutiny, we are a very private family, very self contained and it's not our way to bemoan our lot out of the house in fact we plaster on a smile even if life at home is a nightmare.

I actually think that we cope as a family exceptionally well, the three eldest are great kids, I run the show, ds is a different child to the one he was, dd is amazing and we ask for no help from anyone. There aren't meltdowns or raised voices everyone is considerate to each others' needs and we just get on with it.

Yes my stress levels are sky high but that is mostly caused by the everyday battles with bureaucracy not by family life tbh.

Does CBT have to involve the whole family? I will go to support ds but can I refuse the family therapy because I won't be able to bear it. Why would we need it anyway?

Please somebody reassure me

When CBT was suggested for ds1, they said that he would need the support of the adults around him to enable him to understand and make the most of the process - this is because a lot of CBT requires a level of self-awareness that children who have ASD are often unable to manage.

Did they actually say the whole family would need to attend therapy, or could he just have been saying you would all need to be on board with the process?

They said it would involve the rest of us, I assume because there are five adults in our house and then the two with autism.
I don't want our lives picked apart, told we're doing it all wrong and advised to do things in ways that haven't worked in the past.

I constantly doubt myself, fine tune and analyse things anyway, I don't need somebody else doing that for me.

I fully realise that ds is 16 and I still keep everything simple and routine. I might not discuss the reasons behind my decisions and the choices I make for him with ds but that's because it sends his anxiety into overdrive thinking he has to make a decision.

I can't contemplate anybody trying to see in behind my brave front and the well constructed image that we as a family portray. I'll fall to pieces if I have to look to closely at the cost to our lives as a result of the autism because burying it all deep is the way I cope and it's because I cope that everything stays stable and enables ds to cope.

His anxiety disappears at home, school and the outside world is the cause of the anxiety if he didn't have school or have to venture into the outside he'd be as happy as larry tbh.

To be honest, I can't see how CBT would work in a group.

As I understand it, its about teaching someone to recognise their personal physical reactions to emotions and stress, then to recognise when they occur and finally to challenge the anxious/negative thought patterns with new more positive, empowering patterns. The idea being that they learn to recognise the signs of anxiety, stress or distress etc early enough to be able to challenge them and change direction, iyswim.

They may need to examine behaviour patterns and routine and I suppose they would need you to help with that, but the CBT would be about your ds changing his own thought patterns and behaviours rather than how the whole family lives.

eg, they would get him to think about how he feels when faced with making a decision, to recognise how it feels physcially and emotionally. Then, depending on the practitioner and of course the individual patient, they'd either discuss why he feels that way and/or what would be the ideal way to feel in those situations and how they can work towards him challenging the negative symptoms/emotions and replacing them with more positive productive ones.

I don't see how or why they would need to 'therapise' either yourself or any other member of the family for CBT to be effective.

We were told that CBT is often unsuccessful with children who have autism though.

It's going to be pretty pointless in my opinion anyway. Ds just about recognises a happy and a sad face and doesn't talk. He doesn't discuss anything, it will take weeks for him to say yes or no and then he'll say whatever he thinks will get him home sooner regardless of what he thinks.
In a way I am the one that recognises his anxiety and acts upon it. I can tell by his face, how he stands what I need to do. I can tell when it wouldn't be a good idea to suggest a haircut or when I need to get him home. I can tell just how much he is prepared to tolerate at any given time and I am good at it the only meltdowns or self harm he has are precipitated by school not recognising that point. He hasn't had one when I am in charge for about 7 or 8 years.

In that case, I don't really see why they have suggested CBT, its very much a talking therapy and ds's psych told us it relies heavily on full participation on the part of the client.

They said they would give it a go, as it does work for some, but they did the whole recognising the physical symptoms of anxiety with him and then found they couldn't take it any further than that and he is a non-stop talker!

Like your ds though, he will tell them what they want to hear just to get out of the uncomfortable situation. He can be going through hell, but if they ask him how he is he always says 'fine, thank you'. I have lost count of the times I've sent great big emails to his support teacher or EP the day before they see him, explaining all about how bad his week has been and how he has been upset/stressed/anxious/not sleeping etc, then they email me back after the session and tell me he was fine and had no worries or concerns.

asdx2 - your post hit a nerve too. My DH doesn't do talking either. We had a paediatrician that once asked for my DH to turn up to the next appointment. He did. The paediatrician asked him 1 random question. DH answered with his usual brevity. Paediatrician never asked for him to attend again.
Like moosemama, i wonder whether it is to see that you are all involved and on board with any process - and that you have support at home to call on, if required.

Ask them for their rationale as to why they are suggesting what they are. Ask them to point you to information and research that shows it is appropriate for your family i,e, ASD etc.

Don't refuse it, just say that you need to understand the reasons why they are suggesting this and not, say, a holiday in the Bahamas.

zzzzz glad I am not the only one then. I know I am seen as strange, I sweat at the mention of a CAF or a TAC (never had one) because I couldn't cope with people offering their services.
I don't want anybody looking in, pointing out how little attention the older ones got/get giving them ideas about feeling hurt and resentful because in fact they adore ds and dd and there isn't resentment because they know how fortunate they are to have the independence and opportunities they have had.
I know they are exceptional kids because they went to school sometimes after little sleep covering up the latest bruise inflicted by ds and they still put on a smile and got fully involved with school life. Their teachers had no idea about their little brother and the difficulties they took in their stride because they just got on with it.
Yes I feel guilty that they lost out but I am proud that they are kind and resourceful, independent and tolerant and it's because we had ds in our lives tbh. It was a normal life to them and probably more normal than it might have been because there have never been social workers or carers and respite for ds it was us as a family working together and it's still that way now.I couldn't let anybody try and change it.
I will take ds for CBT because I would walk hot coals if I thought it would help him but if they mention family therapy then I am just going to have to refuse because for me it would be an intrusion I wouldn't be prepared to tolerate.

I was 'reported' to SS and it was a bloody nightmare. The things that they 'ruled' had to change were things like this:

1)No post to be left on in the porch unopened. It could be bills that are going unpaid.

2)The electric oven is dangerous to put on to heat the kitchen and it concerns them that I can't see that.

3)My children should not wear sandles when it is raining in August.

4)My husband should not work in the summer holidays.

Phew, glad they saved our family..........

Oh, yes, and my dd should have curtains in her room apparantly and the bin should have a closed lid.

Oh my God Star if they come here I'll be sectioned, we have a chiming clock that dd insists we all gather round to listen to the charms and then acknowledge every half hour. I'd love to see how they'd take the whole family appearing en masse to gather round the clock
Ds still sleeps in a sleeping bag he had when he was 7 you can imagine it's a tight fit and tatty particularly because it has to travel everywhere we go. It doesn't matter that I have bought alternatives he won't have any of them and has stayed awake 48 hours so that you are in no doubt that he needs it to sleep.
And those two examples are the ones that are pretty tame tbh I wouldn't talk about some of them

R E S P E C T to the chiming clock family!

asdx2 your family sound so lovely, you must be a very proud Mum.

I am nowhere near that good with my dcs, I do my best and when I am well and in control things tick along nicely, then when I get ill (which has been a lot recently), it all descends into chaos (which I can't stand) and everyone gets out of sorts, with ds1 leading the charge.

Starlight at the ridiculous things ss came up with, I've heard similar and worse from other people though, unfortunately. I am always about how such an under-resourced service can find the time to get themselves so wound up about the minutae of the lives of good parents and families.

Blimey, I've got an enormous pile of letters on the dining room table which sometimes gets wet when the boys spill their drinks. It's about 3 or 4 months worth. The other big 'filtered' pile is about 3 years worth. One day we'll file it!
DS1 (13) never closes his (scooby doo) curtains and his bedroom is still decorated as a nursery. The other 2 share and I can barely see the floor. dS3 shares his bed with about 20 soft toys and a dozen paperbacks. Isn't that normal? I'm sure it's normal.

I have had family therapy with DD (ASD) and DH. We were referred through CAMHS and it took nearly a year to sort out the sessions, but we had about 18 months of therapy. I'm also a private person like asdx2 and DH even more so, but DD had severe anxiety and it was leading to self-harm and school refusal and I was at the stage where I felt I had to try anything.

It was useful for examining our family dynamic and I think it helped all of us with communicating and working together. I always used to try to hold myself together and felt like I ran a tight ship at home, using all sorts of approaches with DD, but although it helped with her behaviours she would still feel stressed. CBT is known to be useful for those on the spectrum and we all learnt a lot of strategies.

Tbh I think it's the kind of thing that would be useful for most families, not just those in crisis, though of course it has to be prioritised so many families aren't even offered it. DD is a much happier person now, she had been on Prozac but no longer needs it, and she has learnt to develop a wider support network instead of being dependent on just me, so she has more chance of being independent in the future.

What worries me though is that CAMHS has an appalling reputation here and if they get it wrong it will take months to for me to pick up the pieces.
We have a few fundamental difficulties as well such as ds not being able to recognise his emotions, not speaking and being totally inflexible.
Ds won't ever be independent that is already acknowledged and whilst I run the show ds is hugely pragmatic so will get the support he needs from whoever is available.
I suppose I fail to see why we'd need family therapy when at home ds has no anxiety and we as a family work well together to support him.
Ds's difficulties are in the most part because the school provision he has despite being the best in County with 1 to 1 support isn't enough but I am hopeful that that battle is over in the next two weeks as we secure the independent special school.
The psych believes as I do that once he has the right provision then the anxiety will go.I don't want to have had to have fought to get the provision he needs and then spend the next year putting right anything CAMHS manages to mess up tbh

I'm sure our family would be seen as dysfunctional it shouldn't work, there are high demands, the older ones should be stroppy, tormented and failing, ds should still have the challenging behaviour and dd shouldn't appear not to have ASD when she has the dx she has.
But the truth is it has worked with barely any input from professionals (annual appointment with paed) in the last 13 years. Call me neurotic but I don't want somebody to come in and wreck that.
If it's motivational counselling well I can spot the anxiety a mile off and I know how to ease it, I've been doing it for years and the rest of them follow my lead. The older ones support ds because he's their brother and they love him I don't want them to be told it's their duty or responsibility because in truth anything they give is voluntary, it's never been demanded or expected.