we didnt get it! :(

[lisad123isgoingcrazy]

WEll that was crap, worst one ever.
Pead decided she needed to speak to proffessionals invovled before us as she knew there was difference of opinions. Left us waiting 45 mins, and came in with decsion made that they werent going to make dx as terrible preschool havent seen any of her behaviours at all and therefore she is functioning well and they need more time to see what the rest of us see and more imput!!

I asked how this is helpfult o DD2 and she replied that she would rather make the right dx in 6 months than a wrong one now.

She then went out and spent another 20 mins with proffessionals, brought them all in and discussed decision.

She sent all of 15 mins with us and DD2 and an hour and 15 with others!! Oh and she cancelled ADOS test until feb

Specialist SALT is going today Preschool to do check list of things they should be looking for, and they even had cheek to ask if she still needed her 5 hours one to one.

Oh and im meant to go on a parenting course LOL thats a laugh, I run them as a living!

Im very upset as after all of this, they also told me that they dont advise DD2 starts nursery in April and if i did that they wouldnt reassess her for a year! blackmail. I now have to keep her at this crap preschool, who did not even talk to me today

Oh Lisa thats crap :(

:( that is crappy.

oh no.

Who said she isn't to start nursery in April? it seems really off to say your choice of educational setting will sway their decision to reassess.

Oh Lisa that is awful!

I really don't like the way you're being blackmailed into keeping her at the pre-school. How can you allow her to attend a setting in whom you have absolutely no faith?

I would be tempted to move her to another setting straight away if there's a suitable one with a space. Could you send her to the crappy one just one day a week and a better one for a couple of days too? That would give the new one plenty of time to get to know her before the next review and hopefully they'd be a bit more professional.

If you can't move her you need to be on their backs constantly asking to have copies of all their observations and making sure those obs are targeted at what the SALT asked them to note. You should ask for a copy of that too.

Not doing the ADOS is awful too. It smack of not wanting to see any problems. You must be so angry and upset. Try to focus on it being a delay rather than a refusal to diagnose.

in fact I really think you should complain. Cancelling the ADOS on the preschool's say-so - wtf? Demanding you keep your child in a specific preschool when she isn't even statutory school age? Dangling the reassessment like a carrot to keep the preschool happy? They are so far over the line I doubt they can even see it anymore.

I dont know what to do, I just want to take her straight out but I cant. She goes to special ASD 2 days a week, Im tempted to up her to 3 sesions there a week and just 2 at crappy preschool.

They said if I moved her to nursery in April then there would be no reason to assess her in May as they wouldnt have had her long enough, and so they would force the review back to Nov!

this is what they had from us:

Communication/Social
prefers to play alone
doesn?t like adult lead play
inconsistent eye contact
pulls by hand rather than talk or point
cannot understand girl/boy plus name eg: ?you?re a girl? her reply is ?no I'm Jasmine? very upset by this.
doesn?t come to show object to discuss, only to get needs met.
describes crying as ?eyes leaking?
no please or politeness to requests
No attachment to anyone or any objects, would happily carry round a sock/bottle top/ect or a toy and I can leave her with anyone.
Does not understand if she has hurt someone and will often repeat it.
hugs and kisses on her terms only
Is very bossy
Has no friends that she talks about or is bothered with.

Physical
Hand flapping/clapping
Tip toe walking
spinning with eyes to side
walking along lines
touching fences, walls, glass, anything (sensory seeking)
clumsy
falls over a lot
lines things up, including puzzle piece, cars, PECS, stones, toys ect
little sense of danger eg will jump off things, run off, hit people and things.
needs light on in each room to enter no matter what
hates certain noises eg motorbikes, hand dryer, hair dryers, fireworks and will jump, scream and put hand over ears.
little response to pain
hates dirty hands and will hand flap till clean.

Language
Echolalia
cant understand now, then, later
asks questions "wrong"
repetitive speech
repetitive play
refers to self as 3rd person
use of jargon
has no volume control, everything is loud
Further reports from SALT
Screeches rather than using words

Oh hell. What are they playing at?!

they said they never see any of this behaviour I listed, even though the specialist speech theripist saw it and her special school see loads and have trouble managing her. I do think they just let her do her own thing all day.

I really want to know what they said when we werent there! Im hopping mad!

I bet you are....goodness me...

I've been mulling this over ( and going by my own experiences in the past and to an extent a few that we are dealing with now.. Although not quite the same .. But we have been bounced by the system, our intentions questioned by those who didn't see what was in front of their noses and who knew best and wouldn't budge.. Putting several spanners in the works).

What I have come to as advice ( feel free to ignore).. Is what I call damage limitation at this point. You are already aware of your dds issues and have a good nursey on board.. So all is not lost.
I would be tempted drop her right down to just one day. That way your keeping her in ( meeting obsure requirements).. But you and other placement can pick up from there... Hopefully limiting any negative outcome.. Also that way helpful nursery will have more contact time with dd and should be involved more when the time comes.

And just an add.. We did get there in the end even though we went through hell and were bounced about like a yo yo.

It would have been better for ds to have had an earlier dx.. However through sheer determination from us we did try and fill those spaces at home and did make progress.. It just would have been faster and less stressful if all areas had been working together at the time.

'Specialist SALT is going today Preschool to do check list of things they should be looking for, and they even had cheek to ask if she still needed her 5 hours one to one'

You need to write this down and send it to someone.

If they don't even know if she needs 1:1 (which should be based on need, not dx) then they have NO CLUE about her difficulties and their opinion should be discredited.

You also need to write to the PAED and request a second opinion. You need to state that witholding a diagnosis means denying your child access to services in your area (which it does) and that early interventiong is critical for a child like dd2 who clearly has difficulties. You can state too that you are open to a refined dx in 6 months time if the paed would like to review it.

we have decided to put her in fr another session at her special school (private and cost alot) and just 2 days at horrible preschool. Im going to give it a week or two so I dont appear to have had a knee jerk reaction. I really dont think the SALT was happy and started to say she was certain there was something there, but quickly pulled back :(

i was very clear that I felt early dx was needed to access the services, however they got round that as the special school have autisim advisory in and then we can access sort of from there and have offered a place on the "more than words" group, which is great.
Its hard because as a Pead she is very lovely and DD1 is under her team too, so she knows us well.

I think your right not going for knee jerk. And right to put your dd into a good environment for her more often.
It's a shame SALT didn't speak up.
Having been through this ( as many have on the board).. I know your concerned about dd.. but I'd like to be concerned for you and your dh.. ( parents always get forgotten lol).. You guys need not to get overly worn down by all this ( and there is nothing worse than your dc's needs and welfare to ware you down)..
You need to keep your own resources up so you can keep on going.

you are good parents!

I think I thought this time round would be easier, we know the system and FGS Im a proffessional myself!
We havent let it get too intense this time as they seemed to have all be pretty good, we have a wonderful SALT and a SALT specialist and this wonderful school, so we arent being left with no help at all. DD2 is a real sweetheart and very cheeky and could easily slip though the tracks which is why we were hot on it.
Im meant to running a course for parents tonight and all I want is a glass of wine (or a bottle) and some chocolate!

we already do a lot of the things you'd do for a child with ASD because of DD1 so atleast we arent starting anew
OMG just reliased we have DH big hospital appointment in the April and DD2 in the May, think I better book a holiday for JUne!

You would be well within your rights to be asking exactly what she is doing in her time at pre-school. You could even come at it from the angle of "I'd love to know the strategies you use to overcome all her difficulties so successfully. Tell me how do you get her to engage so successfully in paying with her peers. What activities is she most interactive in? Could you tell me who she play well with so I can invite them on playdates?" Really put them on the spot in terms of what they do with her and how they manage her.

You can also ask them to do some event sample observations where they note every time she does a particular thing over an hour period. It could be when she speaks to another child or perhaps plays cooperatively or other things you feel she cannot do. You could also ask them to note how often she spins, flaps, uses repetitive speech in a five minute period. This isn't asking them to do any more than they should already be doing for a child with SEN so they shouldn't object. They'll then have the choice of giving you some useful info or lying about the obs. If they are not truthful you can ask to be allowed to go in and observe discretely so you can see this miraculous change that occurs in their setting.

I wonder if you live close to me. I'd enjoy going in to observe her as part of my Early Years Foundation Degree.

That sucks Lisa :( Really sorry that the nursery haven't helped you with this.

I just read quickly, so might have missed it, but did the ASD nursery have any say in this? I would have thouht they could have backed up a lot of her behaviours.