Aaaaagggghhhhh!

[Jimjams]

I am so FED UP! Just need to scream really.

Everything has been going well. We went to BIBIC- all very positive- they basically confirmed everything we had suspected. DS1 is autistic, but not severely, but does have a severe language disorder (more severe than we realised- but everything else was as expected). We had found the school we wanted him to go to. Everything was going OK.

I found out today that a SALT that I have never met (and who has never seen my son) has told the school that apparently there is some history between me and the CDC and basically I am a parent in denial and unable to accept that my son is autistic. (Do I come across like that on here- I think not!). I have never said that he is not autistic - I have always said he has other problems which affect him more than his autism (I now know that is a severe language disorder). Down here a diagnosis of autism is used as justificaion not to provide speech therapy which is why I have banged on about this.

So I am furious. I don't really care what the idiots in the CDC think of me. However they are now spannering my relationship with the school before they have even met DS1. Apparently the school are now querying whether or not he should be at the autism base (which is quite frankly crap, understaffed and the children sit in front of videos all day).

It's so crushing. We went to BIBIC- we saw experts ion autism who identified his needs and then we walk straight back into the absolute bollocks that is our supposed local services.

Of course I am not meant to know anything about any of this so I can't even defend myself. Luckily the person who was talking to the school did put in a strong defence. I have to have a meeting with everyone on Friday and I hardly have the energy. Everything I say is misconstrued. To date he still hasn't had any speech therapy. All they do is look for reasons not to help. And whilst I can fight the LEA I can't fight the school. If they feel out of their depth then we're stuffed really. THis is why I wanted to home educate before. If I could arrange lots of social contact for ds1 easily I would. i can't bear the thought of this every bloody year.

Oh Jimjams what a pain in the a**e!This is the hardest thing about sn parenting I think, the constant need to have to battle everything, along with double and triple checking that they have actually got your child in the files and not one they made up earlier. All I can suggest is maybe getting BIBIC to write you a letter stating everything you have told us they said. That way you can say to the school "Oh look Bibic sent me this and I thought you would like a copy. It says that although he is autistic his bigger problems lie elsewhere." Then it is in the school records and you have sneakily had your say.

How depressing for you to have to come back to this though.

S* a brick Jimjams, what a bunch of idiots. Poor you, poor ds, have a cyber hug. Idiots!

BIBIC will send a big report Lou- and the SALT there (an autism specialist) is going to send a separate report. She'll also piss the LEA off as she's going to specify the hours of SALT a week that ds1 needs. I know what will happen though. It won't be counted as it's not "their" specialists. Never mind that they spent 3 days with him whist the CDC have spent 10 minutes (in fact last time we went to the CDC we were there for a hearing test and they were saying "what is he diagnosed as autistic? But he's really friendly and sociable and has good eye contact". A week later we saw a paediatrician at the CDC who said his eye contact was terrible (2 mins after meeting him and having immediately started to test him).

I have no idea what my "history" with the CDC is! I haven't had many punch ups with them! I have with the LEA but not the CDC. That is odd.

I am seriously worried that I am going to start blubbing in the meeting on Friday. Unfortunately DH can't make that meeting and I'm not sure I'm ready for lots of direct questioning.

sorry to hear youre having a bad time of it jimjams but I must say our CDC here do a good job of making parents feel stupid too. It must have been put down on dds records that she had a neurotic-in denial-always pregnant-good for nothing-two faced-alcholic mother. Infact the last time the SALT came round to our house she asked when no.3 was due(cheeky sod)and told me red wine should only be for weekends!

I think its disgusting your ds isnt getting speech therapy and its horrible they have gone behind your back like that with the school. The education system is so frustrating. Do you have portage?-because our portage worker was very good for informing us of our rights with dds education, she used to fight our battles for us aswell. Im so sorry I dont know where you stand with this because it has always been too confusing for me(must be the red wine)

AAAAAGGGGGGGGGGGGHHHHHHHHHHHHHH - from Essex for you........

I would go in positive and share the info from the BIBC and tell them what you are doing at home in terms of his needs.

I think what would stand you in good stead is your understanding and ability to talk about autism from an informed perspective. Hey who knows - tears might make them think twice about causing so much agro and upset. You could state how much you were looking forward to your son going to this school and how positive you are about his progress whilst there - combined with his home programme. Perhaps talk about the high quality of education you believed they would provide. Perhaps if you show you have faith in them and that you can do this programme - surely professionals can do their job!!

Not sure if you have any of the legislation regarding special needs education - would that help you?!?!

ON the other hand I would be beyond being nice now - I would lay it all on the table and let them know you are aware of this misinformation and you are disappointed that a professional would behave in such a manner as to have a detrimental impact on your son's education and development. Your son has a right to education and a quality education and that SALT needs a hit upside the head!! ( sorry people like that absolutely infuriate me!!!)

Will be thinking of you on Friday.

oh fio you made me laugh. These people are sp RUDE!

My portage worker is nice, but she's more on the LEA's side- she tends to fish for info a bit. i think she understands DS1 quite well, and she agrees with me that he tries hard to communciate etc, but she is always interested in the budget (she actually multi-tasks- and has a few jobs- some of which include budgetary type things). What i do have is the most wonderful nursery manager. She will be at the meeting on Friday and she will be fighting for us. She also won't let DS1 go anywhere unsuitable- she's great.

I'm upset because I've been getting on well with the school and slowly building up a good honest working relationship- then this! From someone who hasn't even met me or DS1. It reminds me of the time his Early Bird worker turned up the first time and had been told that he "wouldn't understand who his Mummy and Daddy are". Eh? God knows what she had been told he's always known us (he says daddy and calls me nanig as he can't say daddy). In fact when he was getting upset during a test at BIBIC he was calling for me ("nanig nanig nanig". hardly a child who doesnt know who his Mummy and Daddy are.

I'm hoping that the school will be positive having spoken to his nursery manager (she put them straight about me and DS1). I'll have to play it by ear on Friday.

I'm fairly up on the legislation Eidsvold (in fact I quite like quoting it ) I don't think the school will be a problem assuming they don't think I'm some nutter who doesn't think there's anything wrong with their child (sure it's perfectly normal to pounce on everyon's watch when they enter a room )

The speech therapists here seem to spend most of their time avoiding any children and thinking up reasons not to treat them.

can't say Mummy I mean

I think the school are worried he's more severe than I have said (although I've said right from the beginning he will need full time one to one help) Some of it may be political. If people have been mentioning the autism base it may be because the LEA don't want to fund an out of borough placement. Never mind what is good for the child.

Waht a f**king farce . Because you have tried and succeeded, in helping your child , you get labelled. I can totally understand how you're feeling about Friday - take some tissues and, if all else fails, imagine they're all nude. Not trying to trivialise it, honest, really thinking of you et al.

Jimjams, this just sounds awful. What about getting an MP on your side? Maybe it's a crap idea but I thought I'd post it anyway. This does sound disgusting and I agree with eidsvold about being positive with the school and maybe laying your cards and this misinformation on the table. How can a SALT (not surprised you've never met her, it seems impossible to ever get hold of one from what you've described) behave so unprofessionally? Could you postpone the meeting to give you more time to prepare (if you need it) and maybe to get dh to go if you want him to be there. Lots of sympathy, it sounds so incredibly f***g ridiculous. And you're clearly not in denial about anything.

And sitting on the toilet (oops missed the "h" out).

What a farce. Yeah, right the Mumsnet source of authoritative information on autism and supportive mentor to other mothers of autistic children is in denial. And I'm Sven Goran Ericksson. Where do they get this cr*p from? I really feel for you - and of course your poor son who really needs help while those whose sole job it is to help run away from him. You must feel absolutely despairing.

What a farce. Yeah, right the Mumsnet source of authoritative information on autism and supportive mentor to other mothers of autistic children is in denial. And I'm Sven Goran Ericksson. Where do they get this cr*p from? I really feel for you - and of course your poor son who really needs help while those whose sole job it is to help run away from him. You must feel absolutely despairing.

Sorry for the double post... But how about showing them your mumsnet postings!!

Dear JimJams
I'm not sure what your meeting is on Friday. Presumably you are some way down the Statementing process and that's why you're at the choosing a placement stage? I understood that it is your RIGHT to request inclusion for your child (with appropriate support) as well as it being Government policy, so you're the one toeing the line, not them. I've always found SLTs to be the worst in terms of obstructing parental choice but usually quite nice people (well meaning oafs). I also think it doesn't matter how much SLT BIBIC recommend, you won't get it, you certainly wouldn't here as they just don't have the SLTs to do the work. Also, I'm not sure about the obsession with the actual diagnosis from them - from your pov it gives you access to services and benefits so its certainly important. From the profs' pov a child with language/communication difficulties and any learing issues needs approriate education and support as early as possible. Having run fulltime home prog for over 3.5 yrs I know lots about recruiting helpers/workers/therapists whatever you call them, so please ask if you need any help (I'm sure you don't).

Oh, I'm so cross for you all JimJams. Aloha is absolutely right - you are incredibly informative about autism and its possible causes and I always find what you have to say interesting and worthwhile. If you want an example of a specific posting to print out and show the school, how about your thread on taking ds1 out for the day and how some other people responded to him. I have never forgotten that thread and any time I see a child whose behaviour seems similar to your ds' I think of you and thank you for opening my eyes to why that child might having a difficult time. In denial? No way. I really hope your son's place at school has not been jeopardised by this.

jimjams, the CDC people sound as if they are on another planet. Sending you tons of sympathy and really hope this school can see through the mess and find the truth. How dare anyone say you are in denial about your son? Lots of sympathy heading your way from SE London.

Sorry about rushed post, too. Wanted to write a longer message. Will come back to this.

JimJams - meant to say, you probably won't get the SLT if its supposed to be provided locally, not if provided by BIBIC or private. ALso, re diagnosis meant to say that a child's needs are the same whatever they are called although diagnosis is important for other reasons. (late last night and not thinking straight, also red wine!).

Not on the red wine too Davros

Jimjams, this is dreadful... feel outraged on your behalf!

Thanks for all your support everyone. This is the problem with going somewhere positive- you walk back into the government services- and the how dare you want your child to reach their potential attitude.

TBH Davros with the inclusion policy down here we don't really have a choice anyway. It's mainstream or the under-resourced, under-staffed autism base (the land of group speech therapy for a bunch of non-verbal autistic kids in together with a bunch of highly verbal AS kids).

The statementing process is nearly at draft statement stage. All the reports were completed ages ago- I've now put it on hold so that we can include the BIBIC report. I know we won't get an hour a day from a SALT but I will be pushing for an hour a day from a suitably trained LSA. I'll also be pushing for a specific number of hours from a PECS trained person- don't care if it's a SALT or someone else- just someone PECS trained who can do more than visual timetables. Why all SALT's aren't PECS trained is totally beyond me but still. If SALT doesn't go into part 3 of the statement I will take them to tribunal (there's enough case law out there to know that we would win that one). Actually one of my best friends down here who is a little further along the statementing road is getting ready to go to tribunal over the same thing- so they could have a spate of us!

I should be used to this "in denial" thing really. I've been told I'm in denial for the last year and a half (from people who have spent 10 minutes with DS1 so obviously know him far better than me). I think this all goes back to a run I had with the original SALT over a year ago (she is an autism "expert" except everyone I know who has had anything to do with her says she is a liability). She told me that he couldn't understand anything, I told her she was wrong. She asked if he could point to the correct pictures in a book, I said "yes"; she said "oh it's so hard to tell isn't it" (no I just told you). She told me he couldn;t possibly be engaging in pretend play with little play people. I pointed him out doing it in the assessment nursery (politely- as in "oh look he's playing with the little person on a slide- remember we were talking about that last week" she said "harumph". She said he didn't try to comminicate at all- I said he did- 10 minutes later he lifted his arms to her to be picked up- she blanked him, 5 minutes later he grabbed her wrist, looked at her watch said "an" looked at her and then back at the watch-she blanked him. We ended up having a "disagreement" in the case conference - where I said that there was more going on than just autism. Since then I did a CARS test on him with his nursery (assesses how bad the autism is). He came out mild. I was told that I wasn't suitably qualified to do a CARS test (a monkey could do a CARS test- it isn't difficult), and how dare I think he was mild. BIBIC btw talked about doing a CARS test but said he was obviously at the mild end of the spectrum anyway- BUT (as I have been saying all along). HE HAS OTHER PROBLEMS AS WELL. Quite how that puts me in denial I don't know. I'm quite happy with an autism diagnosis - as it helps get one-to-one and DLA etc (and to be blunt he is autistic), I'm just unhappy that it seems to prevent access to SALT. The nursery manager yesterday suggested having an appointment with the paed to try and get a diagnosis of "autism and language disorder" but I doubt we would get that as they would just say that autism is a language disorder (which it is I guess) and no of course he doens't need speech therapy!!!!

I think I'll just stick to going for SALT armed with the BIBC report- they won't be querying his diagnosis in there- they'll just be stipulating the help he needs.

And as for the school - I guess I'll have to assess the vibes I get from them tomorrow. If it's all going pear shaped - he can stay at nursery for another year and then we'll home ed. And I'll be picking your brains Davros for advice on full-time home programmes.

Thanks for all your support again.

I knew what you meant Davros The BIBIC SALT did say that obviously we wouldn't get that level of support from an NHS SALT (and we knew that anyway). I think her idea is to get the LSA trained asap and then have a SALT visit twice a term. TBH a lot of the PECS stuff etc could be set up by the autism outreach worker- so I'm going to investigate that!

Eventually he may be able to have outreach SALT from BIBIC - which would be good! Who knows they might even be PECS trained (what a novelty!)

jimjams I dont know how they justify not giving a child with autism/ASD access to speech therapy services. They do up here where I live and to be quite honest the services are crap.