No Paed appt til we've seen 'family steps' [hmm]

[Sops]

After seeing our school nurse we've been waiting for 8 weeks for a referral to Family Steps and the Community Paed.
Today, we get a letter saying that at the referral meeting it's been decided that we should see Family Steps first and see how we get on with that.
How that translates in practical terms is that in an unspecified number of weeks someone is going to come and see us and 'help' us implement dozens of behavioural techniques that we (and nursery) have tried to the nth degree already and met with complete failure.
We have read literally dozens of parenting books and tried it all to the absolute best of our abilities.
I can imagine this will take endless weeks of trial and inevitable failure. After weeks of horrendous meltdowns and 'fallout' that we have already experienced with ds when implementing behavioural techniques in the past, ds will again start to believe he 'can't be good' that no-one likes him, he can only be naughty and his self-esteem and behaviour will be at an all time low.
Dh and I are 100% convinced that ds has PDA and that explains why we've failed in the past.
Implementing PDA techniques has met with a great deal more success, a much happier ds and much happier family. BUT we have not solved it all.
On the Strengths & Difficulties questionnaire he scores as very high for overall stress, his pro-social score is a big fat zero, and he's at high risk for emotional and behavioural disorders. On the CHAT he scores 16, which is just into possible ASD territory.
At school (reception) he manages to conform quite well, my theory is that he just the bare minimum he needs to do to get by without attracting too much attention. My fear is that next year things will go horribly wrong at school as so much more will be expected of him.
I thought of going to GP and asking for referral to Elizabeth Newson Centre a while back, but dh was worried that we'd alienate the professional by being 'too aggro' with them.
Do I just do as Family steps ask and 'make' things go wrong to prove the point to them and await the inevitable breakdown when year one begins? Or do I push for more action right now?
Ds is not that bad, but if I ignore the warning signs now, will I miss the opportunity to help him avoid the 'breakdown' I can see on the horizon?
Confused...

I am struggling with the same issue of whether I have to prove my son will fail discipline techniques etc. I dont know what you can do about it but I know I wasted a year and a half with someone from CAMHS telling me aqll this crap about behavioural techniques and thinking about the situation in a different way and if I had my time again I would tell he she was no longer welcome in our home. I would also contact the local PALS service at the NHS and complain if they wouldnt let me go striaght to assessment. No idea if it would be productive but it cant hurt.

Maybe you should write to them detailing the techniques you have tried, his response to those techniques and how you feel that standard behaviour management strategies have caused him severe distress. Then detail the PDA techniques you have used and how he has responded to them.

Then ask that, in the light of this information and your concerns about the damage that standard behaviour management techniques will do to his mental health, they either reconsider their decision to try this Family Steps or ensure that they send an expert in PDA behaviour management to carry out this stage of the process.

If it's a paediatric consultant for a diagnosis you need to see, then you can go to your doc and get the child reffered yourself. Sorry if I'm offtrack here :p

Go to your GP, and get a referral to a paed. Take as many ASD red flags as you can and insist. Alienating the 'professionals' is pretty much part of your job now anyway. The good ones will actually support your assertive stance even if it is just subtley. There is a lot of wastage in the system and time-wasting because whilst it costs more in the long term, there are policitcal and financial reasons to put off spending on your child in this financial year, and pushing it into the next.

I would go to the GP but I would also do the family steps thing, at least to begin with.

We were offered a positive parenting course 18months ago by the hv and decided to do it. We didn't learn anything we didn't already know but we did meet some people with very similar challenging issues which was more of a help. In the long term its meant that now we're in the CAMHS system they aren't suggesting we go on a parenting course. We've done that, ticked that box so the process is now moving faster than maybe it would have if we hadn't already done it.

I think you're right, I should write to them like you say. I wonder if Family Steps actually have any experts in PDA management?!
I have got a ton of typed up notes and observations that I have been making on him over the last few months (all tied in to PDA diagnostic criteria), as well as the CAST and the Strengths and Difficulties Questionnaire. So I reckon I have plenty of evidence to get a referral.
I think I will write to my GP with these notes and make an appointment to discuss a referral. Then write to Family Steps too and say that I want the possibility of a PDA diagnosis taken into account and hope that at least they might read up a bit before the visit [vain hope emoticon]
I can see their point in that we may just be totally useless parents and need a few pointers. They don't want to waste the paed's time if we just need parenting help.
The thing is, I've read up everything I can find about PDA and just get more and more convinced especially when everyday ds exhibits yet another trait or tactic to convince me! I'm so far along the PDA road that I forget the professionals don't know anything about ds at all.
It doesn't help that dh vacillates between ignoring the problem, pretending everything is fine (on a good day) and being very stressed and not being able to discuss it on a bad day. We are having opposite reactions to the issue. I want to find find out everything I can about it and fight tooth and nail for ds, dh would rather remain in ignorance and hope for the best...
I guess the maternal instinct kicks in, in a way that the paternal instinct doesn't. This isn't called mumsnet for nothing is it?

Zzzzz, the GP I have seen twice but he seemed to be very keen on passing the buck to school. I need to go back and see someone else, he was completely rubbish!

He agreed there were issues but claimed school would be best placed to help us.

Go to a different GP. Seriously. I am appalled at how many GPs seem actually obstructive in this manner.

It actually didn't occur to me that they would send an expert in PDA, just that it would help get your point across. That's actually quite a sad indicator of how much faith I have in these agencies now.

I think you're right that it's about weeding out those who need parenting advice. If you write with lots of sensible info they may decide that it's more cost effective to skip that step.... and then they may not.

I am now used to the idea that I am more of an expert in my children's conditions than most of the experts who are paid to help us. I see it as my role to give them gentle nudges in the direction where I think they need to read up without them realising I've done it on purpose. It is a surprisingly effective strategy.

Sops, my son was absolutely fine at school in reception but now in year 1 he is definitely not conforming and his "difference" from the other children has become clear. Please push to get the Paed appointment as soon as you can so that you can get the right help for your DC at school. I had no idea that DS could have ASD so his year 1 has practically been wasted as he has fallen so far short of what he should have achieved with his academic ability.

ben10, your ed psych suggested PDA to you, didn't they? Do you think it doesn't quite fit your ds?
Al1son, I have read up so much on PDA that i reckon I should get a certificate! I will have to practice my gentle nudges, I'm a little too inclined to just say 'you don't know what you're talking about do you?!'- that needs working on.

Just had a lovely chat with the Family Steps lady.
I've briefly explained ds' 'history' and mentioned PDA. She seemed impressed with my encyclopedic knowledge of behavioural techniques and my explanations of just how resistant ds can be.
She has booked us in for 3 weekly appts. She will come and see us at home and says that basically she will just come in order to professionally verify that we are implementing techniques correctly so that we can eliminate 'parenting' as a cause of ds's issues. I'm sure that having her evaluation will be a real help in getting other professionals to take us seriously in the future so i'm really pleased about that.
I also feel reassured that she won't 'make' us implement techniques which we already know are counter-productive.
ds' teacher also spoke to dh this morning at drop off saying that she is aware that we need to have another meeting. Apparently ds is lashing out much less (which is great) but they're still struggling with carpet time etc.
So, I'll arrange a meeting with Mrs P for next week, as well as getting a GP appt. Ben10, I think you suggested writing ahead to the GP before the appt. I will do that- I especially find it so much easier to communicate in writing anyway.

lenin, the trouble with all this stuff is that no one child will conform completely and there is huge variation even in children who do meet all the criteria (for any condition).
For ds it does seem to me that PDA answers all the questions I have ever had about why ds behaves the way he does. It explains so much about me and about my dad too! We all have very different ways of dealing with the anxiety caused by demands but the root cause is clearly the same.
Your ds may have some other condition which may or may not co-exist with PDA. It would be easier to just have one simple explanation of everything, but it's not always possible.

I know what you mean, our ds' mood swings can be bizarre sometimes, but his are always precipitated by a demand, or anticipation of one, or a perceived loss of control.
How long have you got to wait for your paed appt?

DS is "pretty much definite" ASD but still have to have the other assessments before the formal DX Sops. Just push and push to get something moving before Y1 if you can.

Just a thought Lenin, but your ds' mood swings could still be PDA-linked due to a compulsion to control which is part and parcel of the syndrome. Because it's called Pathological Demand Avoidance there is a tendency to think it is only demands that prompt a negative reaction. However, how I see it, is that the demand avoidance is a symptom of the real issue: huge anxiety generated by a fear of not being in control.
Thanks ben10. I will keep pushing, I see what we're experiencing now as the rumbles of warning before the storm is unleashed in sept! I really hope I am catastrophising