Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

Feeling nervous about DD2's appointment tomorrow

(70 Posts)
lougle Tue 01-Jan-13 21:07:07

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

babiki Tue 01-Jan-13 22:17:28

Lougle just want to wish you good luck and for the doctor to be useful! Will be thinking of you x

Ineedmorepatience Tue 01-Jan-13 22:19:48

Good luck for tomorrow lougle

Remember you know your Dd2 better than anyone, stick to your guns.

Ineedmorepatience Tue 01-Jan-13 22:22:42

Regarding the socks, Dd3 came home from the park with her wooly hat on her foot because her sock was covered in mud but she couldnt possibly sit in the car for 5 minutes with a bare footconfused

mariammama Tue 01-Jan-13 22:26:37

It will be ok. You already know how to talk to paediatricians so they 'hear' you. They don't need to see it (yet), they just need to believe there are valid concerns and make a plan for how to explore them.
Get there early, give dd2 a biscuit and have a brew in the hospital cafe before going down the corridor, so you have your 'I belong here' head firmly on.

Handywoman Tue 01-Jan-13 22:41:33

Mariammama is spot on. I will be thinking of you, Lougle. Good luck x

lougle Tue 01-Jan-13 22:50:06

You're right, I'm being silly. I think I want answers, so I'm geared up for a big appointment, when we'll probably get an 'ok, keep a diary for 6 years then come back.'

blackeyedsusan Wed 02-Jan-13 01:56:25

keep detaialed recods of things.. hopefully not for 6 years...

push them for an explanation of what else could be happening then.

have you been on a parenting course? they do like to send you on those first...(sigh) round here anyway. did one just in case they come back at me and say i do need to do one afterall.

good luck!

MammaTJ Wed 02-Jan-13 02:58:04

I have nothing useful to add, but wanted to wish you good luck.

coff33andmintspies Wed 02-Jan-13 03:05:17

An early good morning and good luck Lougle If you are like me I didnt sleep much the day before lol x

It will be ok. You will have your I belong head on as maria says.

Will be thinking of you.

lougle Wed 02-Jan-13 08:04:27

Good Morning smile

I'm hoping to avoid the parenting course suggestion (not that they aren't useful, but because they seem to be used as a delaying tool) as DD1 has complex SN, goes to SS and we've seen this Paed for the last 4 years with her. Also, DD2 isn't behaviourally challenging, really, just hard to deal with once she is fixated on something.

I slept like a log last night coffee, but only because I had such and awful migraine that I took my sumatriptan injection and a diazepam grin

Oh well, I'm confident that whatever it is, it's not going away, so even if he doesn't see it this time I'll be back like a bad penny and every time I see him with DD1, I'll mention DD2 wink

lougle Wed 02-Jan-13 08:06:01

Oh and I have a 10 page (10pt) document with my observations -quotes, etc.

PolterGoose Wed 02-Jan-13 08:23:08

Best wishes for today lougle thanks

silverfrog Wed 02-Jan-13 08:36:03

Good luck today, lougle.

Your story re: socks could have been written about my dd2. That is exactly the solution she came up with in a similar situation grin

Honestly, dd1 is more flexible than dd2 is!

lougle Wed 02-Jan-13 08:50:52

The language thing is odd, though. Does your DD2 have odd language, Silver?

We were meant to see the dentist this morning. I told her the dentist had canceled, and she said "dentists don't get poorly confused"Then she said "oh do you mean the person who looks at your teeth? I thought you meant the building was poorly, because you said the dentist was poorly and dentist is the building."

silverfrog Wed 02-Jan-13 09:04:20

Dd2 has some oddities about her language, yes.

She routinely gets completely muddled as to active/passive - not in a technical sense, but can eg say "Fred is cuddling George" when she means the exact opposite. She spends a lot of time sighing and saying "yes! I said that!" when she said nothing of the sort, or the exact opposite.

I think her general advanced language (she is the typical 'little profesor' type) are masking a deficit in comprehension.

Her biggest ( and most noticeable to others) issue is that she often place adjectives incorrectly, so will say things like 'I want a ball blue' or 'can I have some warm-leggers'. This is a very common ( and glaring, for her) mistake.

Handywoman Wed 02-Jan-13 09:14:02

Have you photocopied your 10-pager for the Paed, Lougle? Good to let them have one to read, huge time-saver.

Really hope you get somebody who does justice to your intelligent, child-centred approach. At least you will come out with a referral to SLT. Crossing everything here.

Let us know how it goes.

Handy xx

lougle Wed 02-Jan-13 09:15:18

With DD2 it seems to be the hundreds of clauses within clauses.

"mummy will you tell Daddy, and Daddy to tell the children, that is DD1 and DD3, that they must be quiet, because I am sleeping?"

"Mum, if somebody has some milk, and it's bedtime, and they don't drink the milk, and it's the next day, is it old milk?

It's exhausting to listen to grin

Ineedmorepatience Wed 02-Jan-13 12:06:15

That sounds like Dd3 lougle and if she misses a step out of whatever she is telling me she has to start all over again. Sometimes this can happen several times in one one sided coversation hmm

blackeyedsusan Wed 02-Jan-13 12:12:38

good luck/how did it go?

yes I got the impression that a parenting course is the first thing that comes outof the drs mouth when I went to the gp... had to pull the well in my professional opinion card... as a foundation/ks1 teacher and was allowed to miss that step grin my most valuable piece of paper is the report that says I am doing everything right and do not need the parenting course.

lougle Wed 02-Jan-13 13:29:20

Ok, so my report is 9300 words blush I think the doctor will regret saying 'so what are your concerns?'

coff33andmintspies Wed 02-Jan-13 15:48:16

Waiting and hoping all went ok smile

lisad123everybodydancenow Wed 02-Jan-13 16:28:20

Message withdrawn at poster's request.

Handywoman Wed 02-Jan-13 16:32:46

Me too, am waiting and hoping (and honking some more).

lougle Wed 02-Jan-13 16:55:02

Well we're back. Basic summary is that speech doesn't concern him, but he noticed some physical coordination issues and some aspergers indications, but not enough of either to suggest a diagnosis.

So he's going to discuss her at the ASD referral meeting tomorrow, refer her to OT and audiology, copy the school in on the letter, then see her in 6 months.

He suggested reading about dyspraxia and reading the out of sync child.

PolterGoose Wed 02-Jan-13 17:04:09

Well... It's a start, how do you feel about it?

It is very similar to ds's first appt with developmental paed, sent off with referral to OT and SALT in our case, I am pretty sure it was the OT assessments that tipped the balance for ds.

lougle Wed 02-Jan-13 17:19:47

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.

lougle Wed 02-Jan-13 17:21:06

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

Handywoman Wed 02-Jan-13 17:21:14

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 Wed 02-Jan-13 17:23:14

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

Ineedmorepatience Wed 02-Jan-13 17:47:01

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 Wed 02-Jan-13 18:02:10

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.

Ineedmorepatience Wed 02-Jan-13 18:23:24

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 Wed 02-Jan-13 18:29:51

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.

Ineedmorepatience Wed 02-Jan-13 18:41:00

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

Ineedmorepatience Wed 02-Jan-13 18:41:41

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

coff33andmintspies Wed 02-Jan-13 18:45:53

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 smile

sazale Wed 02-Jan-13 19:36:14

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 Wed 02-Jan-13 20:17:20

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

mariammama Wed 02-Jan-13 20:27:27

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 Wed 02-Jan-13 21:14:29

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 Wed 02-Jan-13 21:30:04

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.

Handywoman Wed 02-Jan-13 22:20:04

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 Wed 02-Jan-13 22:20:45

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 Wed 02-Jan-13 22:35:51

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 Wed 02-Jan-13 22:42:58

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.'

MummytoMog Wed 02-Jan-13 23:12:50

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

Handywoman Wed 02-Jan-13 23:20:24

Ok I found it 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 Wed 02-Jan-13 23:23:32

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 Wed 02-Jan-13 23:38:46

Thanks handywoman.

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

lougle Thu 03-Jan-13 00:29:25

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.

coff33andmintspies Thu 03-Jan-13 01:17:03

hugs lougle

The original answer I received when anticipating a dx was "he is very complex, nothing will go away overnight" "keep going you are doing well" confused went home and it bugged the hell out of me. Complex at what? what is it, was it or what does he have. Its a disappointing mind blower when you receive bits. We were discharged with that an advised to get his hair cut!

Dont worry about school. The Pead is onto something ie some as/asd traits, poss dyspraxia issues, maybe some sensory. These are what you can safely tell the school she is currently still under assessment for and to treat her accordingly.

Strike out the neurotic mother bit too! he would have said that indirectly in his first sentence if you were lol.

I think he knows you are right and he is just getting all the info and assessments together. In all fairness an OT appointment can take months so a 6 month review should tie in nicely with it smile

Dev9aug Thu 03-Jan-13 08:45:19

Sorry lougle I meant encouraging in a way that paed is not dismissing your concerns out of hand. It's a double edged sword though isn't it, on the one hand, you want these issues to be noticed, on the other hand, it hurts like hell that they do get noticed. ((Hugs))

lougle Thu 03-Jan-13 08:51:31

Yes, DH said he felt like we were betraying her before we went in. If I thought it would go away, I wouldn't bother the Paed.

I worry that he was saying that she could be one of these 'sub-diagnostic' children who don't meet any criteria fully and we may need to just cherry pick methods. Not because we can't or aren't willing to do that, but because the biggest battle is going to be getting school on board and they don't see the issues. A 'label', if nothing else, would legitimise my request for them to at least observe DD2 and see how she is dealing with school.

Ineedmorepatience Thu 03-Jan-13 10:50:07

I used to worry about that with Dd3 lougle, she meers bits of criteria from all over the place.

It may take a while but if she needs a diagnosis she will get one if you are persistant.

There were times during the process when I felt like giving up but ultimately I knew Dd3 was going to need support at school.

I think you just have to go with your instinct now, see what OT throws up and take it from there.

You are not betraying her, you are being a good parent.

Good luck smile

sazale Thu 03-Jan-13 11:03:44

We were told dd 14 (13 when diagnosed) prob wouldn't get a dx as she was complex. The Ed Psych explained that she has bits of lots of things and each of them on there own in isolation were quite easy to support but all together they were compounding her difficulties and making it really difficult for her.

She ended up with a dx of mild/moderate ASD with ADHD traits, demand avoidance as part of her asd, mild auditory dyslexia, auditory processing difficulties, significant impairment of motor skills, hypermobility, low core tone and problems with muscles in her legs!! I think that's everything lol x

sazale Thu 03-Jan-13 11:04:13

Sorry forgot sensory processing difficulties!!!

Handywoman Thu 03-Jan-13 11:24:06

Lougle we've been under Paeds for nearly four years now (two referrals, one from private SALT and one from school). That feeling in the pit of my stomach that dd2 is not NT does not go away but I keep telling myself the average age for diagnosis of HFA is eight so we are not that unusual with all the 'watching and waiting' and endless form filling. I am going to request NHS SALT re-referral when we go back in Feb (tentatively, as IME sorry to say they are rubbish) because in terms of the curriculum it is only just starting to show (hit a wall with reading comprehension) so have faith that you will eventually get what you need out of all this if you keep nudging people in the right direction even if everyone thinks you are bonkers. The fact that you have not been discharged is enough vindication for now <holds out hand for holding along the way>.
HW x

lougle Thu 03-Jan-13 11:41:35

I didn't realise the average age is 8. I might email him, thank him for his time and say that, on reflection,we would be reassured by a Salt assessment as we feel she isn't comprehending as well as she appears to.

What do you think?

Handywoman Thu 03-Jan-13 12:21:30

Yes yes, I would definitely do this.
Go Lougle xxxx

Handywoman Thu 03-Jan-13 12:43:34

Actually I would ring him to make the whole thing easier while your dd2's file is to hand, if you are lucky you might also get an update on the ASD referral.

hw xxxxx

lougle Thu 03-Jan-13 12:50:06

He doesn't do phone very easily -he's always dashing off to panels, etc., but I have his email address and he is reliable with that.

Ineedmorepatience Thu 03-Jan-13 16:31:10

I think that is a great idea lougle.

When Dd3 had her first SALT assessment at 8 I was shocked at some of the things she struggled with.

Bearing in mind that she was talking at 12 months and apart from quite a few quirks and her literal understanding of language I thought her language was advanced.

Actually her social language and understanding of more complex language was quite behind and things like conversation sharing and talking on another persons chosen topic was non existant.

Hope your paed agrees to refer to SALT.

Good luck smile

lougle Thu 03-Jan-13 18:54:38

Well I emailed (outing myself completely here) saying:

"Thank you for seeing DD2 yesterday, the appointment was very useful.

We have reflected on our discussions and still feel concerned that DD2 is not comprehending language as we would expect, although this is masked quite effectively at times. We appreciate that she didn't say a great deal at the appointment and she performs better with concrete subject matter, but we feel she has some significant difficulties.

Would it be possible for her to be referred to SALT for an initial assessment?"

He replied, agreeing to refer but warning of a long wait due to no school report (I suspect 'no school support' is the bigger issue, tbh).

So I found my inner tiger mummy and said:

"Thank you. I was expecting a long waiting list and if our concerns are justified the issues will still be there regardless of the timeframe.

Many thanks

Lougle"

So I'm hoping that he'll get the message that we aren't looking for a quick fix, but we aren't going away either.

I was fobbed off with DD1 for 2 years before we even saw a paed and she's in special school now, so I'm well practiced at the long game.

coff33andmintspies Thu 03-Jan-13 23:14:06

Well done you polite, direct and to the point smile

sazale Fri 04-Jan-13 00:05:01

That's fab Lougle

Ineedmorepatience Fri 04-Jan-13 09:49:16

Great news lougle, now wait a week or two for him to make the referral, then phone salt's and ask if they have recieved the referral and then tell them that you are available at short notice if they get a cancellation.
I have done this a couple of times and it had shortened the wait quite considerably.

lougle Fri 04-Jan-13 10:37:29

I've spotted that despite the health centre saying you need referral, the hospital website says you can contact directly hmm so I figure if I phone them and ask for 'advice' about DD2's differing presentation in different situations and that a salt has informally suggested my concerns are justified, they might be interested enough to bump her out of the 'neurotic parent worrying about fs and ths' pile into the 'does this child have disordered language'pile.

I've been phoning since 9 though, and there's no reply yet. oh well, 6.5 hours left today....

mymatemax Fri 04-Jan-13 16:33:52

lougle, has he given you a timeframe re the other referals? DS2's OT's have been able to by-pass SALT lists and drag a SALT in to some of their sessions as they needed to understand his language comprehension level.
DS2's sensory processing issues manifest themselves with physical & co-ordination difficulties so work on those has helped hugely improve his physical abilities & helped ease his frustration.
He too is very passive & quiet, especially at school.

lougle Sat 05-Jan-13 06:29:45

No, he didn't. For DD1, I got a letter saying 'long waiting list, we'll let you know when we can see you.'

I'm wondering if bibic would be worth contacting to get a fill picture?

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now