DD2 isn't coping

[lougle]

She's been up 4 nights in a row, worrying and panicking about school. Last night we could only get her to settle (at 12.45am) by allowing her to sleep in our bed and DH went to sleep in her bed.

I told the SENCO and she said she'd 'pop her head in'. I told her class teacher who said she'd 'have a chat with DD2'.

She's beyond anxious. She's saying that she's too poorly for school, that her germs will spread to everyone else. That her tummy will never get better, so she can't ever go back to school.

But then, when I get her there, she turns into 'daft DD2' and does two-feet hopping with her head tipped back, laughing, to her teacher. I know this is her default coping mechanism when she's overloaded, but her teacher sees a (somewhat bizarre) cute blonde girl.

I'm not wise and knowledgeable. I'm at sea. I have massive guilt that I was able to help DD1 get what she needed and she's flourished. DD3 has been at school just 6 weeks and some random Year 4/5 boy stopped to hug her and say goodbye at the end of school, because everyone adores her.

DD2 is drowning and I can't even get anyone to acknowledge that she's fallen in the water

I can't change how she presents. She was told off today (apparently) for

a) not copying a title as requested
b) calling the teacher over to help her, when she'd already been helped
c) calling the teacher over again to help her, when she'd already been helped twice

The trouble is, I know DD2 and I know that she's shut down in that situation. She's somewhere else. The teacher sees a girl not doing as she's told. Not listening.

I'm being a bit more pushy than I was. Today I told the SENCO that almost exactly this time last year, was when the school refusal started. I told her that this school has to 'work' or else I'll have to home school.

I don't think they'll 'do' anything right now for her, because she isn't on their radar enough. Her teacher has go to the 'she doesn't listen' stage, which is more positive than not being aware that she's not cued in.

We have a Parent-teacher consult on the 12th - I've also booked a SENCO appointment for then.

I can't work out if she meets the ASD thresholds or not, tbh. She can't pretend play without telling me she's pretending. She certainly can't take a joke or work out that someone is teasing (e.g. My Dad told her that Christmas had been cancelled. She was devastated and wouldn't believe me when I told her it wasn't true and Grandad was just teasing).

She gets obsessions (homophones and homonyms; repeating patterns; telling me when I'm being sarcastic; putting a fabric heart on my chest to 'warm my heart up.')

She's got generally quite poor interaction skills but has eye contact (taught by me).

She's incredibly inflexible. Unmoveable, in fact.

What was the outcome of your letter requesting further SALT assessment.

Woukd you say it was lack of 'Social Engagement' that causes her problems with understanding what is expected of her and therefore anxiety of getting things wrong?

Saw this title and hoped it wasn't you. It is you have the ear of your Paed, as I recall? Her problems are so subtle school staff need it spelling out. Can you call your Paed and ask to proceed with ASD assessments? Just thinking that bottom up not working, try too down (if that makes sense).

top down (sausage fingers)

I didn't get a response, Star. I'm going to send a follow up email. The paed asked his secretary if we have an appointment soon, but then didn't respond when I asked if he'd rather see her before or after her OT appointment.

I'm not sure if it's her lack of social engagement. Today, she said that she was told off because 'she was meant to copy the title but she liked the colour red and she wasn't meant to use the colour red so she didn't use the colour red and didn't write the title.'

I asked her if she'd said sorry when her teacher told her off and she said 'No ' She then said she was too shy. The trouble there is that when she's in that position, she looks like she's giving them the finger, rather than shy - she goes into herself, so she appears petulant.

Arrgh..I know what you're saying, but I worry that people say that the ADOS doesn't pick up tricky cases, and if the ADOS came back negative then she'd never get any help. That's barmy isn't it?

Not barmy to want to get it right. Not barmy at all. I am waiting for CDC SLT to ring re next week. Am going to ask for DISCO then if they refuse whether they can justify ADOS when my dd2 has had ADOS to no avail and which conflicted with observation and reports. The other thing about going through with ASD assessment is SLT will look at 'higher level language' as opposed to bog standard vocab/structure. Can you discuss pro's/con's with Paed?

Check whether observation/higher level language assessments can be done by the ASD SLT peeps? Via Peads? I'm trying to think of ANYTHING!!!!

Lougle, I feel for you. I understand completely where you are coming from re. ADOS and why the process is adversive, but it is only information, and you are the Information Queen with outstanding integrity and intuition and by now in depth knowledge of your child.

You won't end up down a path of no return by going ahead, you're simply opening up the conversation, which I admit is also pretty frightening, but again, it need be nothing more than a discussion.

Dx or not you'll get information and details to explore further, either by getting a second opinion if you feel it is merited or by simply researching exercises to help.

It's just information, and if it isn't enough in quantity or quality there are places you can go from there.

And IMO you should get back to paed for date, OT or no. You can always add in the OT later.

Where Ds got his Dx they denied OT had any business being involved and paed pretended she'd never heard of sensory difficulties and looked at me as if I'd been taking snake oil for mentioning it.

I have to say that where school is concerned our private assessment (which gave no diagnosis) pointed out all the issues and masses of help has come as a result of this. Private SALT and school now working together and sharing resources. It has brought about a sea-change with school despite no dx. I now have a weather eye on secondary school.

Here here zzzzz well said!

Thank you all.

I'm going to act. I promise.

Here's my plan:

-Email SALT to point out that I've had no acknowlegement or reply to my email, copying in last email.
-Go to Teacher/Parent meeting and SENCO meeting (all 10 minutes of them) with a positive 'team' attitude.
-Make sure I communicate that DD2 internalises so much of her stress, that if they do 'see it' it will be very much too late for her.
-Chase OT
-Make Paed appointment for New Year (I want to give Teacher/SENCO a chance to act on our meeting and also see how DD2 reacts to Christmas this year).
-Make sure that I never tell DD2 that she needs to just ignore how she feels. Try and make some 'rules' that will help her to overcome her fear (e.g. one that has worked: 'if you have a worry, tell Mummy, don't hit your sister - for the first time yesterday she came downstairs and said 'Mummy, I have a worry...')

Lougle, so sorry

Your dd2 will be ok, eventually. She has you, and dh, and her sisters. And you got her out of MiseryRoad Infants and into NiceButABitDim Primary, so there's a definite track record of her being able to rely on you. This is probably the nadir of every not-quite-NT dc's year: the adrenalin of acute change has worn off, and the early seeds of Christmas disruption are just starting to sprout. The 'big' disasters of end-of-term etc don't knock maternal confidence so much, as they're obviously down to externals

So if/when you get her in front of the paediatrician, at the very least there will be a sensible letter pointing out the obvious quirks, to add to 'mum says x'. That might be enough to help NiceButABitDim school to understand her, and if not, at least it's a sensible start.

And if she does get a borderline ADOS, but still has difficulties, then the NHS will have to stump up for a second opinion.

Thanks for letting me share here.

This morning she's been lying on top of me telling me that she can't possibly go to school. I've told her that she has to get dressed because we have to take DD3 to school, and that we'll talk about her once we're there.

She said that she smiles at the teacher because it is polite too smile back if someone smiles at you (another rule I taught her )