Meeting with autism co-ordinator next week to go over reports.

[DishwasherDogs]

Just had a phone call from the asd co-ordinator at the hospital. She wants me to go in next week to go over the reports from ds's assessment last month.

I don't know if there's anything I can do now that would make a difference.

I spoke briefly to ds's HT who was "pleased that I've made the connection that ds behaves differently when he's with me". Which I've translated to meaning she (and others) believe that this is a parenting issue, which dh and I know isn't true.

Is there anything I can do or say next week?

Think I'd lost sight of an outcome of this meeting. I was going in for a rant! :o

Would a second opinion be from the same team, or a referral to a different team?
Will I have to know who I want to be referred to, or would there be a localish specialist who ds would automatically be referred to?

It is a nightmare, not ds, but going through this bloody process. It shouldn't be this difficult.

Thank you for all your help.
I couldn't do this without all your advice.
Like I've said before, one day I hope I can return the favour

Thank you :)

Ds has just come back from a rainy bike ride. As always when he gets wet, he has wee'd himself.
I feel like I'm constantly trying to justify why there's something wrong, but that's yet another thing where I don't know any other 9 year olds who would do that. Yet others constantly try to tell me how normal it all is.
All very frustrating and confusing.
We'll get there in the end.

Quite a bad day.
School won't give ds inhalers in the amount that we've been advised (by the asthma nurse) without signed consent from a doctor. I'm maybe being sensitive, but I feel this is another sign that we are not trusted, or we are somehow making up what is going on. (Like I said, probably being sensitive!)
Ds has come out of school angry. At some point in the last 3 months, ds's teacher has spoken to him about threatening with knives and trying to play with matches. I mentioned this once ages ago to her, to try to explain the level of his anger, and that very often we have to keep knives and matches hidden. Ds has denied all knowledge of this, and has chosen tonight to explode about it. But why the f*#k has she spoken to him about it?
Just last week in a rage, ds ran at ds1 with a knife, but he cannot remember this at all

I feel like I have two choices.

1. I carry on fighting for ds, even though this is going against what everyone else thinks, and risk alienating them and increasing their belief that we are lying.
2. Shut up, let it all go, but fail ds at the same time.

There's no way I'm going to fail ds, but I worry where option 1 will lead us.

Surely it would take a far higher level of sophistication for ds to be this manipulative all the time, than for him to put on a convincing show for 6 hours a day. And if indeed he has shown this level of manipulation along with violence for 3.5 years, doesn't this show a far worrying issue, one that would need more urgent and careful handling than if this is ASD?

Anyway, sorry, wittering on now. Wish we could run away to some remote island and not have to deal with these people any more.

Thank you :)
He calmed down, but was a bit edgy all evening.

He coughed until he gagged this morning, so fully intended following the rule 'if you're sick you stay at home', even though he hadn't been sick.

I. Was. Amazing. (Blowing my own trumpet here, as no-one else will think so! :o)
I managed to head off a meltdown, supported him through a hyperventilating episode, calmed him down and got him to school by 9.30.
A minor miracle to start the day off.

Poor boy though, wish it wasn't so difficult for him.

I think you're right that I have to change my attitude about this. I have become more fighty, and seeing it as a them and us situation, which obviously isn't helping. I will try the puzzle route.

School won't give ds inhalers in the amount that we've been advised (by the asthma nurse) without signed consent from a doctor This isn't really their fault. It's a new 'standard' that all the schools round here are following. Not sure if it's ofsted, safeguarding or mass hysteria- but whichever way, it's sweeping our county.

The NHS "nurse practitioners" and "consultant nurse specialists" are seriously unimpressed, given they have done long, taxing and expensive extra courses for the legal right to write prescriptions.

You might find yours will write a very snotty letter without much encouragement. And their associated GP/ consultant paediatrician will back them up. Especially if you show them your ds's peak flow diaries. Tbh, I'd be surprised if anyone in the ASD pathway could interpret them, let alone appreciate what it 'means' regarding anxiety. It may be sensible to get someone looking after your ds's 'physical' health to spell it out.

The nonsense re refusing to give the asthma pump should also help them understand what you're up against

Oops. Not meant to be encouraging fighting I like Polter's puzzle. Think of the enraged nurse as a corner bit to help solve the whole think

"School won't give ds inhalers in the amount that we've been advised (by the asthma nurse) without signed consent from a doctor This isn't really their fault. It's a new 'standard' that all the schools round here are following. Not sure if it's ofsted, safeguarding or mass hysteria- but whichever way, it's sweeping our county. "

Thank you for that, I feel better about that now!

I'm still waiting for the asthma nurse to ring, as he was the one who gave me the specific advice that we've been following, ds's GP gives conflicting, confusing advice. I'm hoping he will be happy to write a letter.

I'm keeping a record of his peak flow in the hope that it will show a link, but tbh every single time we see a GP about his breathing, they ask if we have cats (we do), then give me a "what a stupid woman" look whilst saying that it's obviously the cats. Which gives me an opportunity to point out that he has been allergy tested and is fine with cats.
I have asthma, and my biggest trigger is stress, so I'm recognising this in ds.

:o

sorry you are having this. my school didn't believe me, even with a diagnosis. it cuts to your very soul. big hugs.

Sorry to come to this late - but it is all about being totally manipulative to get what your dc needs.

If you go into a meeting in fight mode they will just dig in and get defensive of their original ideas.

So lots of 'thank you ever so much' and 'I know how busy you are' whilst slipping in the 'how long was your last ASD course?' when they are off guard.

Of course you are right to keep going, but it can involve being creepily nice to people who have no idea what is going on.

Thank you Chaise :)

Senvet, you're right, but the more I do this the more I realise that I am crap at communicating. I either come across as a pompous arse or I get it wrong and come across not as creepily nice but just plain odd. I don't think I go in in fight mode, but suspect I'm a little intense at trying to get my point across .
I'm going to write things down for tomorrow so it's clear and I don't have to try to say it badly.

I'm going to have to apologise to ds's teacher tonight because I said something and it came out wrong and I think she thought I was criticising her, which I wasn't.

Due to ds being ill I had to cancel the meeting, but have it this afternoon (eek!)

I have the letter from the paed, NAS info, Luke Beardon letter, copy of a book called Living with High Functioning Autism with various passages highlighted, and a list of things I need to ask about.

Wish me luck!

Been and done. I didn't even bother to get anything out that I'd brought.
Most likely to be learned behaviour. She's pointed out that some dc are more sensitive and difficult and this is often seen in the ADOS and DISCO (or ADI, not sure which, both are mentioned), so even a score showing ASD may not necessarily be accurate.
Signs at school must be seen or no diagnosis can be given
We must have continued contact with enhanced mainstream services and parent support advisor or we're not engaging with help offered.
So fucking fucked off with the whole fucking thing now.

My worry with that is that she'd say the same thing, and we'll be in the same position but £s down. Which I know is a completely defeatist attitude.

Signs at school must be seen or no diagnosis given?

Who the Fxxk do these people think they are? Their professional arrogance is astonishing. With no medical expertise they deem themselves capable of diagnosing?

We give up , in despair, simply because we have nowhere left to turn!

Well poo.

Do you have the observed signs of masking in writing?