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

(((((Starlight)))))

Know the law.

Show them you know the law.

Get written records of EVERYTHING.

but they're REALLY MEAN!!

What exactly have they said / done Moonlight?

We think theya re there to help us, in many ways they're not- they are there to ensure a certain amount a year is spent on helping some people, and they gatekeep the rest. Their job is to try and stop you getting the support; your job is to make sure you do. See it as a game.

Theya re mean though; ours arbitrarily chamnged the definition of disabilty to stop us getting support and I can't do anything about that as it is now enshrined in legislation./ Not just us of course, but (and I have seen the memo) 'the very alrge number of famillies with a recent diagnosis of autism'... along with 'there is only a 54% uptake of services in the autistic community and that is to be encouraged'.

A whole string of things. Wooliness to frustrate, clever wording to cover arses, implications that parents misunderstood something along with a backhanded apology, rewriting of history, deja vu meetings (lots of these), lying, insistence that giving you more will take away from people 'who really need it', threatening with tribunal , insisting that the parents are responsible when it comes to requesting extra resources, yet insisting you should leave it to the 'experts' when you ask them questions, time wasting, general intertia, inconsistent information between agencies and within them, passing the buck, refusal to answer questions, and the best one.........that this is simply your 'perception' because you are finding it hard to come to terms with the fact that your child has a disability.

BTW, the definition of disability varies between agency here too.

Here, the operational definition is !) to have either a terminal illness or a disability that requires constant assitance with alllife skills AND to be able to prove the disaqbility will not improve.

Which with ASD youc an't prove becqsue they just say 'oh so many get almost better'

Which si why I start my MA in ASD next week PMSL- last time someone said 'well I have an MA in it and he's not autistic at all'pointing at child who has stared at PC all day; child is nw in snu with dx of asd

This is the most offensive of all and very sinister.
'.........that this is simply your 'perception' because you are finding it hard to come to terms with the fact that your child has a disability'.

Right, stay cool and remember.It aint personal. Many would do the same thing for their kids. They are doing their job and their job entails dividing up scarce resources to ensure everyone has a portion. There isn't enough to go around.That's a given. If everynoe fought for what they needed, it would all collapse. It's about damage limitation on their part. But, that's not your issue so don't allow anyone to lead you down this path.Operate stuck record strategy.

'I am not interested in talking about other children or how you structure your service.I wish only to discuss my child's needs and how best to meet them.'

Have you followed protocol at all times? (Ie registering your dissatisfaction with Parent Partnership even if you think them shite)

Have you cced all relevant parties when you send correspondence (do it by email and track them so you know when they are opened)?
Do this every time, then one person's blustering/imcompetence is common knowledge to all.

Send the occasional letter by registered post.That causes feathers to fly.

Put a solicitor's name (someone well known in world of SN at end of letter in cc list, even if not got one at present.Refer to 'our legal representatives' in correspondence.

Keep track of everything and how it all blends otgethero n a timeline.

Start ABA programme ASAP, as showing this commitment makes you a real force to be reckoned with. Speaks volumes about your willingness to go through with a tribunal.

Choose your fights. ESSENTIAL.
Don't get sidetracked by issues of lesser relvance. I mentioned before your issues with not being able to drive and dealing with 2 kids and public transport issue. Ditto swimming. The issues are ones that 1. Are beyond remit of 'authorities' and 2. Issues faced by every mother of small kids.

Complaining about these will make you look like a whinger. You don't want to be seen as that.You want to be sen as a courteous,organised assertive person who knows her rights.

(Hope oyu are not offended but this is such an important point.)

Lodging an official complaint (according to complaint procedure protocol) is a hugely effective strategy as then peopel have to sit up and listen and follow through and explain themselves to managers woh are obsessed with targets and beancounting.

But use this judiciously. If you complain will nilly about a lot of stuff then you will be dismissed as a loon. Collect evidence of uselessness which, if you reach an impasse, can be gathered together and delivered in manner of dirty bomb.

You may well have lots of differnet courses of action going on with different depts. at same time, in which case, a separate section in a lever arch file for each is good, or different files.

You could keep macrotrack of all developments with a diagram/timeline pinned to a wall/noticeboard.

Oooh, I gotta checklist

PP ranty chat -
ccing - . Hardly anyone will give me their email and letters from the LA tend to be cced to acronyms without names . I have challenged this but not got satisfactory response.

Occassional registered letters -

solicitor referencing but not yet declared war. Will do next week after a key meeting and then will announce solicitor.

Keeping track Have contact sheet.
Timeline have services journey document, but will put together a better one as soon as declared war.

Start ABA Workshop planned in 4 weeks time but need to find tutors

Reduce whinging Am making a final point in a response to a letter and then will let it go.

Lodging official complaint Have contacted people to tell them that I would like to lodge an official complaint against their service and asking them if there is one final step I can take before that. Has been quite effective so far.

Stockpiling evidence of uselessness Easy-peasy!

Sectioned lever-arched file

Timeline but have a wall calendar which will probably do it.

Thanks very much. Sanity restored.

They are having a pre-meeting before our key meeting. I have asked them to prepare written answers for the following questions:

1)The outcomes/benefits to my ds from their input so far. (none imo)

2)If they managed to come up with any, how do they know it was a result of their input.

3)Do any of them disagree that ds is further behind in relation to his peers than he was when his needs were first known to the LA.

I feel quite sick at the thought of attending the meeting to follow, but I take comfort from the fact that I won't have to argue my case or even listen except to take notes, I'll just nod and then delcare 'thanks but no thanks! see you in court!'

Right....

Freedom of Info request to go to relevant authority (health and/or education) asking for name, address, email and job title of these peopel.A designated person now usually deals with FoI requests.

Don't dramatically announce solicitor.Slip into convo or letter in casual stealth manner. Eg in response to point made by some drone, respond with 'well of course that merits further (see what I did there?) witho ur legal representatives..'

Re this bit
'Do any of them disagree that ds is further behind in relation to his peers than he was when his needs were first known to the LA.'

Don't phrase questions like this. You put them in driving seat by appealing (seemingly) to professional judgement. It's needy too. You state that he is furher behind and you follow by concrete examples. They don't know yuor kid like you do (some will hardly know him at all) and will actually not be able to argue with your point.

Meetings are scary but.....dress nicely, take your time,if you need to compose yourself, get out your pen and write something (^anything!! Even 'Humpty Dumpty') and you then control pace. Start meeting as I said earlier by distributing piece of paper and assking for names, addresses, email, job title. Don't go 'Um ,ah, would you mind putting your names on this..'

You say confidently 'Before we start, I need a record of persons present. I am circulating this piece of paper and require your names etc etc. Prepare it if you like with little columns for each piece of info (super duper in control not to be messed with message).

Take 'your representative/s' with you.

Okey dokey??

For tutors...

ABA UK forum
Gumtree
Local uni (notice up in psychology or child devpt. dept.)
Local paper

Code of Practice will state quite clearly that info needs to be easily comprehensible to parents and accessible thus refusing to give emails or job titles or names and using obscure jargon and acronyms is clear evidence of breach of code.

im going to remeber about insisting on emails to , i refuse now to agree to things on phone insist on hard copies

Hi - I have no experience of what you must be going through - but I do have experience of dealing with some very difficult conversations and I have added the following in case it helps.

I think it is very important if you can take an
advocate with you to this meeting. This also helps for evidence gathering too.

This means you will have a witness as to the meeting and someone who can also check on your strategy and the emotional energy that you are likely to bring to the meeting, due to your own back story and past frustrations.

One tip that I find often beneficial is to cultivate an attitude of discovery and curiosity.

Pretend you?re entertaining a visitor from another planet, and find out how things look on that planet, how certain events affect them, and what the values and priorities are there.

If they really were from another planet, you?d be watching their body language and listening for the unspoken energy as well. Do that here. What do they really want?

What are they not saying?

Only when you sense that they?ve expressed all their energy on the topic, it?s your turn. What can you see from your perspective that they?ve missed? Help clarify your position without minimising theirs. I know this may sound counter-intuitive.

i.e. you may say when I introduce a problem that I would like to discuss (problem X and go into detail), I?m doing so as I want long-term success on x issues. Maybe we can talk about how to address these issues so that my intention is clear.

What is your purpose for having the conversation? Also what is the outcome.

Keep this clear and keep your emotional energy in check. You may feel belittled, ignored or marginalised but recognise that this impact of how you feel can affect your outcome.

Good luck with the aliens , Stay resilient.

Ah understood Moondog wrt question 3. However did need to say something that required a response. Suppose it should have been 'what are the LA going to do given that ds is now further behind etc.....' although I know the answer would be 'meet with me to discuss' [yawn].

Thank you too snapple. Really helpful suggestions. Won't be my last meeting like this I shouldn't think either.

The 'representative' bit is hard for me. I don't even have anyone to mind my 1yr old who will have to come to (although THEY have found someone to mind her in the room next door).

Do you think I can suggest that I take the minutes (to ensure that I understand correctly) and circulate so that I people will have to make their points absolutely clear to me. It should also slow the pace. - Or is this a very bad idea.

A slight side issue moondog if you don't mind. My ongoing saga with the SALT now has them saying that now that ds in in preschool, salt will be delivered there because it is better for it to be done in a 'natural' environment. I feel it is just another way of delivering nothing, and justifying their continuous ignoring of me. They say that he needs help generalising. I say that he needs help learning and practicing key skills in an environment without distraction before you can get to generalising, and I can do both myself with appropriate guidance. I'm not way off am I?

Moonlight RE the SALT- ds3 gets it ins chool weekly and I have found it is really reliable, if they'renot there school is on the phone hassling them and the teachers take part in the sessions so they can integrate it into his daily program. I dos truggle to know what's happening for hiome use, but if you can solve that hurdle my own experience is that school nbased provision works fine.

Thank you BethNoire I do hope you're right. The trouble given the evidence I have wrt the SALT being provision being totally useless so far 'not in preschool', it is very hard to believe that it will suddenly improve just because ds is in preschool.

I suppose perhaps they could be more effective if in more of their comfort zone or a preschool setting rather than having to deal 1:1 with an anxious parent. One can only hope!

Re SALT, can you try attending the pre-school sessions, see what SALT homework the keyworker staff and doing and also ask for homework for you to do?

Thats how it worked here. As Beth says, the pre-school organise the appointments, I just turned up.

Wehey! Been given 3 SALT targets, with ideas and strategies and ways of recording results.

Have been given a booklet to fill in called NFER-NELSON Living Language Pre-Language booklet, although the 'instructions for use' has been crossed out

Been told that he is too young for a formal SALT assessment. He'll be 3 in November. Is this right?

I've also been given a form to fill in with his likes and dislikesm and a form to fill in with things that he says and how often.

Are we moving forward or is this the equivelent of giving me lines to keep me quiet and busy?

Hi Starlight-I think you should consider taking someone with you, hard as it is . One of the previous posters recommended an advocate. I don't know where you are but I know there are a number of Advovacy projects based around the UK with paid staff and trained volunteers who are expert at this kind of thing so maybe try googling your county and advocacy project or something? Good luck. Keep us posted!

Waiting Just found out today, that the majority of attendees have pulled out and there will still be a 'planning' meeting and TAC review, but not the Team Around the Child.

I'll have a look into advocacy, but knowing my area there will be nothing. There isn't anything else.

You absolutely need to have someone to mind your child and to take someone with you. (Parent Partnership will provide someone.) You cannot concentrate or keep cool worrying your baby will play up.

Re doung own minutes, if you are doing it, don't ask, just do it. You can't speak and take minutes though.

Nothing wrong at all with Living Language.It's great. Nothing wrong with SALT in nursery either.Yes, skills need to be taught additionally in discrete trials ad generalised but that is not what a SALT does, so that is part of ABA programme.You can't get cross with a SAL who doesn't carrry out an ABA programme, it's liek being cross with a plumber who wont fix your car.

In ideal scenarion, you get SALT and ABA person woh work together and understand each others' worlds. Not many of those about though.

ie mind your baby at home, not in next room. No way.

$64 oo0 question is whether SALT alone good enough for peopel with ASD. I don;t think it is. Not that iti sn't massively beneficial, but without ABA underpinning it, it's pissing in the wind.

The SALt ahs amde a massive difference to ds3 but at the same time has highlighted how different his processing is IYSWIM- everything seems either to be scripted, linkd to his obsession or self interest comments. Willelarn ABA and TEACCH basics on the course I am doing, whcih I hope will give me a few ideas but don't get to do that until after Christmas. That book you suggested Moondog (think it was you) don't shoot the dog was fab- and as small DH-friendly also.V V useful with ds1.