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Feeling nervous about DD2's appointment tomorrow

69 replies

lougle · 01/01/2013 21:07

What if the paed doesn't see what we are seeing? We will still be left with the same child, who still has all the issues we see.

Today, she had a major meltdown. She couldn't find her socks at Nanny and Grandad's. She wouldn't wear her shoes because she had no socks. She didn't want to leave with bare feet. We didn't have her socks - they may have gone home with her cousin. She was hysterical and her solution was for DH to drive home, collect some socks and drive back again, so that we could all drive home.

Then, she was incensed because DDs 1&3 were singing. They wouldn't stop, so she was screaming 'SILENCE, SILENCE, SILENCE, SILENCE!!!!!!'

I have another migraine Sad

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lougle · 02/01/2013 17:19

I'm not sure. He said that if we just wanted an ASD DX then he could refer (bear in mind we've seen him for 4 years, so we have 'cards on the table talks), but I Sayyid I didn't want that, I want to identify what, if anything, is causing her issues.

Trouble is, she's so passive that she's not going to cause trouble.

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lougle · 02/01/2013 17:21

I am surprised he isn't concerned about the speech and language when a SALT has told me she sounds disordered though.

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Handywoman · 02/01/2013 17:21

How do you feel about it, Lougle? Good that the wheels have started moving. Am surprised at no SLT referral but what do you think?

Well done.

HW xxx

Handywoman · 02/01/2013 17:23

Ooh x posted. Did u tell him about your SLT convo?

Ineedmorepatience · 02/01/2013 17:47

Lougle, in some areas you can self refer from SALT assessment, it may be worth looking into.

Good that he has referred for OT though and that he has pbviously seen enough to make him want to discuss her at the referral meeting.

Sometimes it can take a long time for these complicated children to get a diagnosis [or not as the case may be].

He didnt offer you a parenting course thoughGrin

lougle · 02/01/2013 18:02

No, he didn't offer a parenting course! DD2 is very passive and he knows DD1, who is anything but.

I didn't say what the SALT said.

He did say he thought she had poor theory of mind, but added that it isn't exclusive to ASD and that if she has sensory integration issues then it can change perception of the world.

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Ineedmorepatience · 02/01/2013 18:23

When Dd3' theory of mind was tested and she really didnt have a clue [bless her]

I asked the SALT who tested her what other conditions could lead to it being so under developed [we already suspected ASD but kept being told it was unlikely]

The SALT who works with children with ASD everyday said that it is normally only ASD that causes children not to develop theory of mind.

Of course many people dont really like to use the theory of mind argument but personally I think it has a massive effect on Dd3's understanding of the world.

lougle · 02/01/2013 18:29

would this count as a theory of mind issue?

Watching 101 Dalmatians (again) and nanny says "14.....there are only 14 puppies, one died"

DD2 says "why is nanny lying? the other puppy is alive"

she can't understand that we know that the puppy lives, but nanny doesn't know that yet.

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Ineedmorepatience · 02/01/2013 18:41

Yes, because she thinks that nanny should know because she knows. IYSWIM

Ineedmorepatience · 02/01/2013 18:41

She doesnt realise that other people dont know what she is thinking or that other people have different thoughts to her.

coff33andmintspies · 02/01/2013 18:45

Not sure if it goes under theory of mind but DS is the same where films or anything comes from. We should KNOW whats happening or going to happen next because he does!

Sometimes he has already made a plan of events in his head and is annoyed when it doesnt go to plan not noticing that he hasnt actually TOLD us what the plan was he assumed we should know iyswim x

Things are moving for her now and that is a good thing.

I didnt just want ASD either I held out and requested everything defined explained individually as he was complex and some strategies dont necessarily help other issues. Well done :)

sazale · 02/01/2013 19:36

My dd 13 ASD doesn't have theory of mind but she passed the tests for it as they were stories and then questions and she knows what you're supposed to do but doesn't do it in real life.

Lougle, My ds 5 has a phonological speech disorder and some of the things he says sounds like your dd (eg says "I've eaten my dinner all") and he has word finding difficulties along with hypermobility and social anxiety that presents like selective mutism. He is under assessment with CDC and they asked me if I thought it was ASD as no one can decide. The thing is I don't know either and I'm not an expert. My dd has meltdown after meltdown where as my ds is placid and over compliant. This worries me that whatever is going on (and I know there is a something going on) will get missed.

lougle · 02/01/2013 20:17

DD2 passes the Sally & Anne test - I did it earlier (at home).

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mariammama · 02/01/2013 20:27

Well done. The ASD meeting might come up with a SLT appotinemtn anyway. if not, self-refer if you can, or cheekily push the school to do so even if they aren't sure (I printed off and completed the forms for them so the senco only had to print off an IEP and sign the box Wink)

Ineedmorepatience · 02/01/2013 21:14

Hmm, interesting lougle

I still think it would be worth you asking for a salt assessment. As you have said she has some unusual language issues.

The dalmations thing indicates that her ToM is not quite where it should be, but then again she is still little so she may just need more time.

lougle · 02/01/2013 21:30

It's really interesting that of all the issues I wrote down (10 pages) I dedicated only 2 paragraphs to 'physical issues' and simply noted that she is physically cautious, yet that was the thing he noticed most.

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Handywoman · 02/01/2013 22:20

Lougle there are different levels of ToM test, dd2 passed one but not the other. It was more sophisticated, will search it out.

I think if there is any ? Over ASD a SALT evaluation would be key because language issues can just look so much like ASD. I would consider asking specifically for a referral.

Am interested in what other conditions involve under-developed ToM.

Anyone?

HW x

Dev9aug · 02/01/2013 22:20

HiLougle ds1 is extremely cautious as well and passive. Although he has a Dx of ASD and probably has SPD as well, which we have only discovered recently.

Not trying to compare here but just thought that I should mention that he has been having regular OT weekly and is doing AIT and light therapy and has made really good progress with it. So maybe the Paed is really onto something with noticing the cautiousness and the OT referral. I would be really encouraged by it.

Ineedmorepatience · 02/01/2013 22:35

I agree handy, Dd3 did one involving balls under coloured cups (like the magicians trick), only she watched where the ball was put while I was out of the room. She was totally convinced that I would know where the ball and been moved to Hmm

Fairly conclusive I would say.

Even the SALT was surprised at how clear cut it was as she had originally been one of the people who didnt think Dd3 had ASD!!

lougle · 02/01/2013 22:42

I improvised Blush but I used two teddies and two trainers, with a playing card.

I told her that Lorna (her teddy) had a lovely card, and she didn't want anyone to touch it, so she put it in her trainer. Then she went out to play. But giraffe is very naughty, and he stole the card, then moved it to his trainer. Lorna came back to get her playing card. Where would she look?

DD2 immediately said 'her trainer'. When I said why? she said 'because she putted it there.'

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MummytoMog · 02/01/2013 23:12

Bless her cottons :) might give this a go when DD's language is up to it.

Handywoman · 02/01/2013 23:20

Ok I found it <a class="break-all" href="http://sgspsychology.m.webs.com/site/mobile?dm_path=%2Fautism.htm&fw_sig_url=sgspsychology.webs.com/&fw_sig=9676bbeb51d9396f6feb49b22adfb91d&fw_sig_permissions=none&fw_sig_access_token=b6147ae48078d75065378f2c8705074fdc566fdc&fw_sig_site=38366699&fw_sig_permission_level=0&fw_sig_premium=0&fw_sig_is_admin=0&fw_sig_time=1356064394472&fw_sig_api_key=522b0eedffc137c934fc7268582d53a1&fw_sig_session_key=144b7895715773d9bf01e6b8de32d3e106e3f6e46f52c440b966943e1f58dbbf-38366699&fw_sig_social=1&fw_sig_tier=0&fb_sig_network=fw#1110" rel="nofollow" target="_blank">here. please fast forward through the VERY basic A-Level psychology article to the Strange Stories. We did the Sarah and Tom picnic story which dd2 was clueless about. Also the relationship with these tests (which have mainly been tested on subjects with a lower verbal IQ) seems not completely clear cut for those with higher verbal IQ.

mariammama · 02/01/2013 23:23

Ah, but Lorna is probably real and has a mind of her own (albeit one which works exactly the same as dd2's Grin). Lorna knows you can't believe anything involving giraffe, who is just a toy and can't really do stuff Wink.

lougle · 02/01/2013 23:38

Thanks handywoman.

Maria, you made me laugh, you are so right!

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lougle · 03/01/2013 00:29

I'm just gutted too, though. I wanted him to either say 'defnitely neurotic' or 'actually, you're right and she has x'. Instead I got a (honest but frustrating) 'bits of that, bits of this, not sure and even if I was might not get diagnosis' and see you in 6 months.

School's going to love me.

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