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stressed/upset/frustrated at lck of support+help in last year with dd age 3

(14 Posts)
osospecial Mon 17-Sep-12 13:07:12

Hi sorry in advance but just really need to rant!
Everything started a year ago sep (2011) at dd 2year check with hv. She was referred to salt+paed for ruth griffiths test due to poor communication skills, only a couple of words, lack of eye contact, lack of interest in others, no shared interest etc.
We waited until apr to be seen by paed who basically said to come bk in 6months (sep 2012) as dd still young+so didn't do any test. Just been told appointment won't be this month but Nov as they are behind with their appointments! Felt like I've been waiting for this month to come around to maybe get some answers so frustrated by this delay again.
We waited until june 2012 until she finally had her 1st 5week block of speech therapy which was gng well but since that finished we have to wait again now for the next lot which won't start until around october! She is due to start school in january+im worried sick about how behind others she is. I think its a joke that she is being made to wait months between therapy when it could be really helping her now!
She has started a playgroup a few weeks ago and although I was told by salt they would send forms in to try get 1:1 help for her there in june I hadn't heard by sep and when I rang they hadn't even sent it off yet (the week b4 she was starting!) Then I was told they wld go out+see how she is settling in on her 3rd week (today or tom) and I've just been told they're not coming until a fortnights time now AAARRRGGHH! And it'll be weeks again after that that the therapy sessions will actually start again! The playgroup do agree that she needs this additional help+have also sent these forms in for 1:1.
Just had dd 3year check with hv and realised how little has been done, with regards to getting help, in a year!
I feel like I need to see how much support she needs in playgroup to see how she is going to cope in school. I have no experience of this type of think+feel a bit lost+out of my depth. I have read hanen mtw and have been doing salt myself and I am happy that dd is making progress but I also work 9-3 5days a week.
I just go back+for on whether dd has asd all the time and its driving me insane now!
I try not to concentrate on it but its always at the back of my mind+nobody says what they think.
Age 3 dd can count to 12+will count everything, she loves counting. She will say words wen looking at picture cards (around 20-30 words) but not to ask anything or speak to anybody, she only communicates by pulling ur hand.
She will not look at something you try+show her, how ever hard you try.
She has no interest in other children but uses adults wen needs something, even strangers, who ever is closest!
She still has very poor understanding+would not understand dd get shoes etc without visual clue. She is very visual+ good at peg puzzles jigsaws etc. She is very highpitched a lot of the time. She licks+puts everything to her mouth+will swallow stones, hair bobbles etc if not watched. Have to watch her all the time also cos she climbs everything, kitchen counter/windowsills.
Can anybody just tell me wot they think about this please? Why she does these things? Just need some advice about it all. Sometimes I also find it very hard2 get her to wind down in night, she will shout highpitched, babble+kick leg for over an hour before dropping off (not all the time but say once a week maybe) sorry for long long post+thanks if u managed 2read it all! x

mumslife Mon 17-Sep-12 13:26:39

Message withdrawn at poster's request.

osospecial Mon 17-Sep-12 16:08:06

Thanks for the reply mumslife, I have been told to keep ringing to check for a cancellation with the paediatrician to try get her seen before nov so that's all I can do on that for now, its just frustrating waiting all the time, feels like I've been waiting a year and now there's further delays. It doesn't help that every time I ring the salt there's either no answer or I leave a message and nobody gets back to me, I'm constantly chasing them! Thanks for the advice on writing things down I will do that before our appointment.

StarlightMcKenzie Mon 17-Sep-12 17:31:47

osospecial

Not sure if this will make you feel any better at all but you have pretty much listed the experience of at least 2/3 of us on this board.

Can you afford a private assessment? Not that this will get you any help. It doesn't. But it at least stops you from being fobbed off on the basis of no diagnosis.

In terms of the 1:1 thing, you'd be best applying for a statutory assessment. That makes a whole lot of services come out of the woodwork.

StarlightMcKenzie Mon 17-Sep-12 17:35:25

Have you got any of the Hanen books?

That;s a good place to start. Also, keep a log of every phone call, the date, time and gist adding any quotes that you think are either outrageous or helpful. Communicate in writing or email as much as possible and follow up phonecalls with emails/writing to 'clarify' that you heard correctly.

For example, you could have followed up in writing to the paed that they thought she was too young to do the test and will want to see her in six months.

Keeping a log and confirm things in writing. This gives you ammunition later and also lets them all know you're keeping tabs and have a list of their broken promises.

Also, research ABA.

Needingsomeadvice Mon 17-Sep-12 18:07:40

Osospecial, you posted on my thread about DD and said it sounded familiar and was very helpful to me. I have since got a date for a formal morning's assessment with the complex communication team (which will be soon) but other than that no practical help yet really. SALT saw her for several sessions but not to actually help her but to get to know her since she actually had something to write in her report to be used in this assessment.
DD is 3 in a few months and sounds a lot like yours except she is perhaps a little more interactive with me, but major separation anxiety and general anxiety at people she doesn't know.
I think it IS a very slow process indeed. I don't have any suggestions apart from maybe phoning the paed who saw her?

osospecial Mon 17-Sep-12 18:11:57

Thanks starlight, yes I have read both Hanen books (more than words and it takes two) and I have found them very useful. I find it very frustrating that dd has a 5week block of therapy then has to wait 10 weeks+ for the next, I was starting to see improvements and I know she would be improving more by now if it hadn't finished. What is a statutory assessment with regards to 1:1please? Been told today that the new play group do think she needs this 1:1 as well so I'm glad I have some back up there.
Good idea about keeping a log, after being told salt would visit dd in play group today or tomorrow I rearranged her audiology appointment and now I found out from play group not from them that's it's not going to be until another 2weeks.
It's sad to know that so many have these experiences,it's a stressful enough time without being messed around.
I've briefly looked into Aba before but tbh it's hard to know when/where it would fit it as I work 5 days now, do you know if Aba tutors visit play groups or is it something i need to take her to or have at my home?

osospecial Mon 17-Sep-12 18:18:59

Hi needingsomeadvice, I am having a bad month I think where my patience has run out, I was concentrating on 'getting on with what I could do' until sep and now it's just annoyed me that we have to wait again.
The formal morning assessment sounds good im glad you have got that, I'm not really sure what to expect in this appointment in nov that we have so maybe I could try get some clarification on that.
You're right it's a very slow process and the fact she is starting school after Xmas is weighing on my mind at the moment.

AgnesDiPesto Mon 17-Sep-12 18:36:01

Do seriously consider applying for a statutory assessment. Get a copy of the SEN Code of Practice and there is a standard letter to start the process on IPSEA website. Its a statutory process with (supposedly) legal timeframes so it can speed up diagnosis as if the LA don't want to do an assessment or issue a statement and you appeal that decision to a tribunal the LA have to have sufficient evidence to show an assessment / statement is not required. LAs would also have to show a tribunal that all the support eg 1:1, SALT is in place without a statement being needed, so as Star says its a way of making things happen. It takes a minimum of 6 months to get a statement and if they refuse any stage and you have to appeal that could easily be 12-18 months so you need to start now. Young children only need one overarching report (eg by an educational psychologist) to get a statement. You should self refer to an Ed Psych and ask for an EP assessment.
Once you apply for a Statement the LA will start to take you seriously.
You could apply to Cerebra (charity) for private SALT voucher of £500 - Cerebra is for children with neurological conditions but as I assume you are considering possible ASD then would qualify but you may need to specifically say thats whats being considered.
The log is a great idea but you also need to go back and write down what has happened (or not happened) from when you first asked for support - that way if it ever goes to tribunal you can show you have been seeking support since 2011 and have a chronology going back that far.
Keep any emails etc or follow up conversations with emails to keep a paper trail.
Also look at NICE guidance for ASD diagnosis.
You can also make a complaint to the NHS Trust about delay / raise with your MP. We have a lot of problems with diagnosis here and if everyone alerts the MP then the MP may see a trend and do something.
Are you eligible for legal aid? if you apply for a statement and its refused and you appeal then you may become eligible for legal aid. If so legal aid will pay for private reports and you will get more info that way.

osospecial Mon 17-Sep-12 18:55:41

Wow thank you Agnes,there is a lot of helpful information there, thank you for taking the time to write all that down for me.
I am shocked it takes a minimum of 6months to get a statement I didn't realise it would be that long, I really need to start the ball rolling for that then. Does anybody know what a entry to education referral is and if it relates at all to getting a statement, as the HV has offered to do this last week if the salt are not doing it, she said it just highlights that dd may need additional help or just let's school know about her issues in advance. I have been trying to get hold of salt to see if they are doing it, but thinking I'll just tell hv to go ahead with it tomorrow

osospecial Mon 17-Sep-12 19:36:49

How do you self refer to ed psych and what is a ep assesment please? Just been on ipsea website and found the standard letter for statutory assesment so thanks for that, I will do that tomorrow,feel better already now that I have some direction for what I need to be doing thanks smile

StarlightMcKenzie Mon 17-Sep-12 19:41:57

Oso, it takes a minimum of 6 months but if ASD is in the frame it will probably involve at least one if not two appeals, each of which set you back by another 6 months.

You absolutely need a copy of the SENCOP and it is sensible to apply for a statutory assessment (the assessment that leads to a statement) yourself, so you can keep control of the process and be in a good position for any appeals.

StarlightMcKenzie Mon 17-Sep-12 19:44:25

Oso. Good.

Don't be afraid of any of this. This might all sound a bit OTT but it is the standard route to provision for many and those you come across may feign surprise at you taking things into your own hands, I can promise you they are dealing with more than you doing it this way.

Needingsomeadvice Wed 26-Sep-12 10:03:09

Hi again Oso,

Just thought I'd let you know that DD had the ADOS yesterday and she met all the criteria so now has a diagnosis of autism. I might have thought this deep down all year, but it was still a shock.

I hope you can get your assessment soon. Any new developments?

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