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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

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?

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