Feeling like I'm letting ds down, I can't seem to take any action.

[Sops]

Despite our absolute conviction that ds has Pathological Demand Avoidance and needs some help. Despite that fact that everyday is almost constant low grade grief from/with him. Despite my parents saying 'you just can't go on like this. He's not happy'. Despite reading everything I can on his issues. Despite coming on here and seeing our experience with ds reflected in so many of your experiences. Despite the professionals acknowledging there is definitely 'something' going on. Despite me thinking and thinking about what to do and how to do it and determining on a course of action, despite it all, I am putting it off.
I have made the first tentative steps on a road to diagnosis, the school nurse referred us to family support and paed, but we've had a letter to say they will leave a paed appt until after family steps have seen us which means weeks and weeks more waiting. Even when we see the paed I know it will just mean waiting for the next referral. Meanwhile, life is passing my ds by.
I keep resolving to go to the GP and make a case for referral to them, but then at the last minute I back off and don't make that appt.
I have written an eight page document of carefully set out explanations of how ds conforms to each of the diagnostic criteria and supporting observations of his behaviour.
But I am too scared to take the next step.
Dh is supportive and knows in his heart that something needs to be done. But he is even more scared than me, and sometimes gets angry and says we should just leave it, he doesn't want him 'labelled'. We are scared of the professionals, I think, scared of the formailty of going to see them. We have considered that we could go privately and get him assessed but it costs £3000 to get him assessed and that's an awful lot of money. We would pay it, but people have suggested that the LA will not take account of a private dx and so it would be £3000 effectively wasted.

Don't be scared of the labels. It's the labels that bring the money in.
I have never heard of this condition so can't advise on specifics but don't be scared of anything. Think it through like you're playing chess.
The private assessment (cost 500 , 7 years ago) worked wonderfully for dd. We went to a harley street doctor who we knew was sympathetic to the therapy we wanted for dd. She had a look, assessed and agreed and put it in her recommendation. Then we had the nhs app a few days later. I showed them the report and she asked if we were looking for a second opinion. We said 'no'. So, she said then she wouldn't assess and comment as it wouldn't be professional. So we ended up having a very frank chat about how the nhs and education council works and a note saying that the private report is the one to look at.

So, the private report was the one that the edu people had to consider during statementing and this had the recommnedation for the therapy. The timing was a mistake on my part and I thought I was screwing up but it worked a charm.

Sometimes we have to put ourside our fears as parents for our childrens sake.

Make that next step and engage with the professionals. Feel the fear and do it anyway. It will give "fear" less power.

Being scared of the next step is one thing and we've all felt that at some point. However, burying your heads in the sand will ultimately do none of you any favours and you will come to regret that so much.

See a "label" just as a signpost to getting your DS more help.

Part of the problem, I think, is that I find it so much easier to communicate in writing than I do face to face, especially when ds seems to me to have such a complicated, contradictory personality. I find dealing with professionals like teachers and doctors very stressful myself.
I started writing it all down so that i could distill it down to the salient facts, but I just keep adding to it. It has helped as I keep refining it and getting it more succinct. But in a way I feel like I'm doing it to avoid actually going for it, letting it always be a work in progress justifies me putting it off.

We had our son diagnose's 12 months ago but when it came to putting pen to paper to get the "label" we ran a mile so i know exactly how you are feeling. We didn't want to label our son in feal of how it would affect his future ... but here i am 12 months later with no support and no-one to turn to for help regreting that decision and finally persuing the "label" after all ... now im only kicking myself because i didn't do it sooner.

I can really understand this. I spent ages gathering information until that became an end in itself. Are you also perhaps frightened of the definitive 'yes there's something wrong, therefore his future in education (or whatever) will be down this route' (sorry, don't know his age to know whether this bit is relevant).

I vividly remember applying for a statement and it being all-consuming, then when I heard we'd been successful my first thought wasn't - great, we've done it - instead it was -oh my god, so something really is wrong (this was pre-school, so I'd not seen how she might be unaided in school and was only projecting how it might be - very different to having it all fail and being desperate for support). So lots of emotions swirling round and a lot of denial, even though I was the one asking for help.

Would it help to put some deadlines on the calendar? Rather than drifting for a week worrying about when to get it done, say you'll give yourself a week/fortnight/whatever off but on such a date you will make the next step? Just give yourself a breather?

Having read back what I've written, I didn't mean to suggest you were in denial at all. What I mean was - when I was gearing up to enter the system, I knew there was something wrong, but on some level I didn't want it to be official and to be in the system, if that makes sense.

I am seeing the teacher after school today. She told me at the end of last term I should go back to the GP after he was understanding but passed the buck back to school. We were on holiday for the whole two weeks so couldn't go then and then I decided to see how he settled back at school.
But, I have made a GP appt now for friday (the earliest I can get pre-bookable) but will probably get a same day one tomorrow.
Just going to talk over teacher appt with dh now.

Well done, sops. You're getting there. Any 'label' you get can be private, but TBH, it won't actually change your DS. If he does have PDA, or ASD, he has it, and not getting the DX won't make it go away. Having the DX will help you to open doors to getting him the support he needs. It will help you to know that any interventions you are trying are the right ones for your DS. It can do nothing but help him, however painful it is (and I know it is painful ) for you.

Had our meeting with the teacher tonight and it was fine. She was trying to reassure us and put a very positive spin on things, but even so we do feel hopeful. At least he is not falling way behind academically, he is making some progress with reading and writing, although carpet time still a big problem.
Best of all though is that dh and I had a big long chat together with my parents and I feel so much better for it. M&D are very supportive, they know how different he is to all the other grandchildren and can see that he is not a happy boy. We all agree that he has really changed since starting school, become more introverted and no longer interested in his 'pet subjects'. My dad said that when ds started school it was 'like a door closed in him.'
My mum had come with me this morning to drop the dc's off at school. We had the usual grief from ds about dd having a toy he wanted on the way. Then he was upset because he'd waved at a friend but the child didn't see him. By the time we got there he refused to get out of the car, crying and squealing. All distraction and persuasion failed, so I had to just drag him out, yet more crying and squealing. He cried and whinged all the way in with me alternately dragging and carrying him across the road. Once in the classroom he clung to me, when I finally persuaded him to get down and do a fuzzy felt picture he made a big sad face. Fortunately the lovely TA came over and I managed to get away.
My mum was really shocked at just how difficult he was, and even more shocked when I said that was just average!
Then I told her how when I had just popped into the loo at breakfast-time dd had done something minor to annoy him and so he'd got half a dozen weetabix and thrown them at her and then jumped up and down on them. I made him clear them up but had to endure threats of how he will never love me again because of it. I didn't mention the three times he'd pulled dd's hair.
I had a few tears at the realisation that all 5yo don't behave like that every morning...
Picking up tonight was average too. As soon as he came out he announced he wanted to go and play at a friend's house. I explained that it hadn't been arranged but that we could definitely have friend over to play one night this week and i would arrange it etc etc. While I was still speaking he launched into a huge wail (attracting the attention of the whole playground) and carried on crying and wailing for a good 5 mins (felt longer to me!). Eventually, using all my skills of persuasion and distraction I managed to get him out of the playground. Yet again, just another run of the mill afternoon...
Luckily I have a really thick skin and have learnt to ignore staring onlookers, I've certainly had plenty of practice!
I'm waffling now, it's too late!
Anyhow, I feel much more positive that we can and will get some help- it may take (a very long) time but in the meantime there is lots we can be doing and the long summer hols to look forward to. Only seven weeks of school left til we break up.

Label = professionals start taking you more seriously, so the very thing you fear, is the thing that will give you more power.

'Despite me thinking and thinking about what to do and how to do it and determining on a course of action, despite it all, I am putting it off.'

OMG, don't feel like that, - please. You have to go at a speed that you can manage as it is a marathon not a sprint. I can tell you with utomost certainty that there is NOT ONE parent on this board that doesn't wish they had moved faster, or can move faster.

Don't waste time and energy on self-destruction. That isn't going to help you or your ds.

'I find it so much easier to communicate in writing than I do face to face, especially when ds seems to me to have such a complicated, contradictory personality'

Good. That is a brilliant position to be in. Make the appointment. Let it go wrong, write a letter afterwards 'on reflection' then you have the evidence in writing of your position.

Now dh and I are deliberating over what to do next.
The teacher said that because ds is not having any great problems at school she can't access support from her end. I said, well maybe it is just us, and we need to look again at our management of him. But she said no, we must continue to pursue professional help, and we do definitely need to see a paediatrician (she repeated this another four times in the course of the conversation too).
However, because there aren't major probs at school, I think the greatest risk for our case is that it will be assumed to be 'parenting issues' rather than a neurological issue, and we may get dismissed.
So, is it best to wait until we have been evaluated by Family Support, have them validate our parenting approach and eliminate other environmental factors so that in the future other professionals cannot blame ds' issues on poor parenting?
Of course, there is a chance that it IS poor parenting that is causing his issues and believe me, I would be delighted to hear that! Then we could simply change our handling of him and everything will be fine.... [fingers crossed emoticon]

Going down this route would mean 3 weekly visits from family support, meaning they'd be completed by mid June. Then, if she feels we do need further help, our case would go to the next referral meeting and it would be decided which professional would suit us best for the next stage.
Then it would be around 13+ weeks until the appt, taking us to mid sept.
This might be a really good time to see someone as ds will then have had two weeks in year 1 and we'll be able to see how he copes with that.
Am I procrastinating again or is this a sensible course of action??

Have only just read your thread Sops but your story is so like mine I felt I had to say something.

We wrestled with ourselves for 12 months before we went to the GP about Dd3, I have known for a long time that some of her behaviour/issues are outside the normal range. I dreaded trying to explain about her because it all felt so negative.

When I did eventually go to the GP I took a Tick list of ASD characteristics which I had downloaded, I wrote comments for each of the criteria that Dd3 met. I hardly spoke to him at all I just showed him my evidence and asked for a referral.

I didn't take Dd3 with me to this initial appointment.

You know you have to go for it, your Ds will not be diagnosed with anything if there are no issues and you can drop out of the system at anytime just by not agreeing to appointments.

Good luck and be brave.

My ds appears not to have major problems in school due to his extremely passive nature and the fact he directs everything inwards. School report "no problems". When assessed/observed by experts in school they have recognised that he has a whole host of difficulties. One thing i would say is that teachers are not experts in recognising SN's, experts are and so are you.

Be careful with the 'bad parenting', as your ds 'appears' not to have any difficulties in school, professionals might well be likely to blame it on bad parenting and getting a dx will be even more of an uphil struggle. As i said, teachers are not experts.

Thanks for the encouragement and wise words everyone.
I think you are right he definitely is flying under the radar at school.
At nursery school our experience was reversed- much worse behaviour at nursery than at home which undermines any 'poor parenting' hypothesis.
I guess, if he's being good in one place he has to let it out elsewhere!
I was definitely extremely passive as a child. My own experience of school was that I just 'shut down' in the classroom and did the absolute minimum of work/participation that was required to avoid 'repercussions'. Teachers mostly thought I was very lazy or some a bit thick. I've always observed about myself that the less intervention/teaching there was the better I did academically, now I understand that PDA was at the root of this.
This is how I see ds, I think over these two terms he has learnt to do what he needs to do to get by, ie. conform to the rules in the main and be seen to be doing the 'academic' work. So alarm bells are not ringing at school, but we can see at home that he is just not the same child, and I want my sparky little lad back.
Although school say they use him to start off class discussions as he has very good general knowledge and is articulate, I think they are only seeing the tip of the iceberg. If he can direct his own learning he is the most inquisitive, questioning child. Earlier dh said, I've just had to explain the concept of a 'republic' to ds! Ds' questions about why the queen was on coins, led onto an exploration of hereditary titles, why some countries don't have royalty, what a republic is, what a president is, who Barack Obama is, and ended by ds saying Barack Obama shouldn't be the president, Barack Obama should be a Llama Farmer because it matches his name. Then laughing his socks off at his own joke!
Over the easter hols ds asked his uncle what his favourite meal was, answer 'lasagne' after a few more questions ds asks 'what's the Latin word for lasagne?'. After meeting my cousin's australian gf, he was asking about different accents, I tried my best to explain and he thought for a while. Then he asked what accent did the Saxons speak in? Then I have to launch into a lengthy explanation, punctuated by yet more questions of why we don't know that and how we do know other things about the past- thank goodness I have a degree in archaeology! These are just glimpses of the kind of child he was before school.
I don't think the teachers see this kind of thing- definitely not.

God, I bet all this sounds totally ridiculous. One of my faults is over-thinking things (in case you haven't noticed) If anyone has managed to read all this you have done very well!

LOL sops, Your house sounds like mine, only I don't have a degree to bail[sp] me out.

I think school stifles our kids and tries to force them to conform.

I have just moved Dd3 to a much more informal school where the children are encouraged to be themselves, so far she is doing well and I am beginning to see the real Dd3 again. Even during the week whereas before she moved we only saw glimpses of her at the weekends and more in the holidays.

After I told her she was moving she told me that her old school had felt like being locked in a cage. I felt terrible that she was there for 3 years.

Ineedalife, glad you've found a school where your dd feels happy.
Well done for reading all that- this has turned into my waffling on like a lunatic thread!