Help, the 'system' is getting nasty and I'm getting lost....

[MoonlightMcKenzie]

Help me refocus. I had a bit of a laugh in the holiday with various sleepy LA departments but now everyone is back from the holiday and they are MEAN and absolutely know that I'm onto them, and they are on to me.

It's a blardy scary place to be and it is very stressful. Need a pep talk.

Starlight

I would second moondog's point that you need someone there. You don't want to be outnumbered.

It must be a bit frustrating that some attendees have pulled out.

You can take notes but I think it may be more beneficial if your advocate take the notes, as remember that so much of the communication at meetings is non verbal. Good point by waiting to look into advocacy organisations.

I agree that minding the baby next door could unsettle you.

Beth, I'm really glad your SALT is working for you and also that you found 'Don't shoot' to be useful.

I need to stress that I am proud to be a SALT and that it is a profession that has a lot to offer. I love my job and look forward to going to work every single day.Trouble is, caseloads are so heavy and remit so wide (I tear arund the country seeing people of all ages with all manner of issues and leave every appontment knowing I could have done better with more time and more resources to hand.

Also, as I said, without basic understanding of scientific principles of behaviour, I think SALT is largely pointless and my personal mission is to integrate principles of ABA into my practice as a SALT. (While not all SALT is suitable for people with ABA, conversely, ABA and its principles are relevant to everything in the whoel wide world. Truly.

You are fighting a system, not individuals.

'without basic understanding of scientific principles of behaviour, I think SALT is largely pointless'

I forgot to addd for people with ASD.

Okay, - so my DH is coming too. Is that enough or do I need to rope in my mum?

My baby will be fine next door, - seriously. DH and I dumped her in a baby group in the room next to preschool on ds' first day and left the building and got in the car before we remembered her .

Forgot to add too that it is actually a CDAC with a team meeting tagged on the end, so DS will be there too. THEY decided that it would be too much, so the TAC turned into a review meeting and lots of the professionals (except the diagnosing ones) bailed out with a real TAC planned for later.

I can only really see it being possible for the SALT issues to be addressed, and to be fair to the SALT team, they are beginning to slowly listen to me and (without anything concrete written down I might add).

I know I'm fighting a system. In my case it feels like the Never-ending Story and I am fighting the Big Nothing!

Are you leaving your child with someone you don't know next door?
Sorry, am confused. How is it their job to look after the baby?

It's not their job. It's a little bit complicated and tied up in promised respite that never materialised, extremely short notice for the CDAC and a meeting they wanted due to the timescales of the statutory assessment and the summer break - all in one hit. They offered a nursery nurse to childmind and that is fine with me.

Oh well, if they offered, then that is great.
Hoe you don't think I'm being arsey, I'm just trying to help you pick your fights.

That was the single most important thing I learnt.

Moondog I thought it was an arsey comment actually, but.........

you're right. Tonight DH and I had a rare opportunity to talk and we have culled a few battles and grasped a few 'difficulties' that the LA SHOULD be removing and found our OWN solutions so we can stop fighting those and focus where we need to.

And I'm blardy brilliant at parking!

Moonlight I know it feels you are fighting the big nothing, but IME after a few years in the system (DS1 dx 2006, ds3 dx last year but we had known for a good while with both), you do get used to it. Am not sure it gets easier but you start to know systems, and people know you and after a while it becomes more routine and easier to handle. When the boys were dx'd I was regualrly asking for help on here but tehse days I find that other than a whinge about a specific incident every now and again, I finally have the experience to be my own case manager IYSWIM and that makes a great deal of difference.

The other thing that helped- and I found this hard, but.... - was to remember to compliment when it is due also. A certain bod at the LEA helped us enormously and I e-mailed his manager to say so: I now find my criticisms are taken seriosuly and dealt with, as they know I am reasonable human and not just taking out my anger on a random department IYSWIM. I'm not a natural at it, but it helps to make friends and not just enemies. Besides, you never know what position someone wuill have in a decade- you might just find you need help from someone you praised or indeed upset.

Also agree that you need to prioritise. I am awre that rspite will be massive issue for us by the time ds3 is mature, but right now I can survice without it- education OTOH is a key focal point. So we address our energies there. I know respite will be a huge battle as they refused us any when ds4 was due (I had to labour in the living room with the boys upstairs- fortuantely all went well but it did cost us ££ to hire a doula so that if I had been admitted I wouldn't be alone- fortunately a MN doula gave me a discount LOL. Right now ds1'seducation is the pits and I have concerns about a new Head, ds3's is idyllic but expensive so I have to keep justifying- I have allocated those as my priorities.

Yes I second the complimenting thing. I found this out by accident - that praising the (NHS run) Hanen program really softened them up to what I was saying ( they hadnt' seemed interested before). I always email/write in thanks for everything now

OMG It gets worse. My keyworker wanted to meet with me to talk about the unmet needs and issues. She told me she was my support too. I had a whinge about EVERYTHING and was sarcastic and tongue and cheek etc.

She then wrote me the 'minutes' and asked if they were an accurate reflection of the meeting and could she circulate to all involved

I looked at the whingy points and wrote that they were 'pretty' accurate, but my dh and I have prioritised and could she just circulate the points we highlighted.

This morning she sent an email saying because I said they were accurate she circulated them anyway

But you hadn't agreed to that. Did she know you wanted to agree the minutes with DH first?

Grrrrr, she sent them to me and I told her that I had had a rare opportunity to talk to DH and ammended her points to just show 3 that were our key points.

Nope. My gut reaction was to send her a WHOLE corrected version, because 'pretty' accurate does not mean accurate and she has this now. However, I'm thinking on reflections I should send an email (so it is in writing) stating that I deem her action to have been a breech of confidence, given that her keyworker role is supposed to be emotional support too and I do not expect her to circulate my unguarded offloading moments to the whole world.

(although, if I'm honest I don't mind the whole world knowing 'unofficially' iyswim).

Should I ask for an official retraction?

You need to pick your fights as moondog says so depending on how pissed off you are about this I would maybe just put it down to experience. Plus you really want your Key Worker on your side.

I would ask her to send an addendum clarifying the matters that have changed since the meeting- do it nicely and say that the minutes, whilst vaguely representative of the meeting (!) are not entirely so and you didn't intend for them to be distributed as you were rather off guard, however that could easily be recitified by sending an addemdum.

If she says no get the CC list and send them anyway, saying in it that 'My Dh and myself are cioncerned that the minutes, whilst largely accurate, do not represent how we feel about the current situation, and we wish to advise you that our priorities are currentl A/ B C'

DH and I

cut tihe somerset-shire-isms out first LOL

Good advice but too late. Sent harsh email asking her to retract and that I considered it a breech of confidence. She hasn't been any good as a keyworker anyway so not sure I mind losing her 'help'!

Bumped into a random person in the street today who fate decided I should meet (okay I don't really believe in fate). She has an autistic ds just a bit older than mine, has dealt with the very same professionals, preschool etc and is a LAWYER!!!

It really was random. She bought me a sausage roll too

It was from Greggs!

I've lost it haven't I?

yes haha!!!

I don't know if it puts it in eprspective a little, but I'm reading this about keyworkers and meetings and the like and thinking we get none of that (am peachy btw) even with two.

I don't begrudge it BTW- just a giving another perspective IYSWIM? DS3 gets SALT and a unit palcement, ds1 nothing, both have statements

I think the meetings etc are just because he is newly diagnosed and under 3. There seem to be a lot of people involved.

I expect once he's in preschool, all the 'support' will be expected to be delivered there where I can't see it and I'll never hear from them again.

The keyworker phoned me to apologise for the misunderstanding, has agreed to retract the document, and to take most of the people off of the invitation list for the 'REAL' TAC at a later date, because I just want to concentrate on the education issues at the moment.

Yay, some good news. Peach said my parental representation was excellent and just suggested one minor change.

Great to hear