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Here are some suggested organisations that offer expert advice on SN.

well dd has finally been given report and offered support...

(25 Posts)
WhichWayWound Mon 26-Jan-15 18:08:01

Soooo, dd is two, assessed language as 12 months developmentally. Noted in report her use of signs.

Been offered... a parents only signing course. So that's in response to me stating I know makaton and bsl and use it. And her using it.

I tempted to offer to bloody lead one for them (I do this at my work)

They held back her cdc report over two months to send with this.

On the plus side she did very very well in it.

Social self care:18 months
Social interactive: 18
Hearing: 12
Expressive: 12-15
Motor: 24

She's 23 months. So very very good from early delay, but slightly dubious she has grown out of hemi-plegia! Because she felt normal and swappeg hands. I feel it's early days to see this as she's so young, she could barely use her arm, still struggles to roll. I'm not confident it's as yet a non-issue. I would say she's socially excellent, but slightly delayed in motor personally. Her mri at 11 months was used in hemi diagnosis. Funnily a few weeks ago hospital pead described her arm aS hyper-reflexive in her report.

Diagnosis: isolated speech delay.

MeirAyaAlibi Tue 27-Jan-15 00:09:22

1) Find out who leads the signing course (this may take some ingenuity, but you can probably track them down). Email them outlining your signing skills and asking if they think your attendance will help your dd. if no answer, phone them. If still no answer, email whichever numpy referred you, asking them to find this out "because I need to concentrate on meeting dd needs"

The reason for this charade is because otherwise you risk being officially labelled with the local codeword for "feckless and ungrateful help-refuser"

2) self-refer back to occupational therapy. Yes, I know physio is probably more appropriate, but it's usually only OT that accept parent referrals. And they're generally very sensible omni-skilled, parent-friendly bunch who will plug your dd back into services with a more sensible problem list

3) apply for DLA and use it to pay for a private physio assessment

MeirAyaAlibi Tue 27-Jan-15 00:11:05

Are you sure it's your dd's 'real' report?
Cut and paste accidents aren't unknown...

senvet Tue 27-Jan-15 00:21:09

Parents have an astonishing track record of being right about their children and their needs.

Now and again we are a bit off, but mostly I'd put my money on the parents.

WhichWayWound Tue 27-Jan-15 07:02:03

I don't disagree with amazing progress with motor skills, but there are subtle things. I'd be surprised if it doesn't affect her handwriting or balance. Surely a 23 month old who can't do stairs at a crawl or uneven surfaces is a little off?

I find the social score odd (4 days older and she'd be delayed on it) , it's her strength.

It's her report all right... but with bells on! We laughed at some of the things she apparently does.

I'm lucky it's not a big issue. She's also seen at hospital (seizures) and they have therapies. They right their own thing. I agree with what they put. Also I am lucky in that I've worked with early years Sen a long time, I've seen hundreds of careplans and delivered them. At this stage I know I can support dd well. It's education when I may need help for her. Frankly careplans here are crap. All the same wishy washy parent delivered cut and paste. I've felt embarrassed at many a meeting hearing a slt patronising a parent.

senvet Tue 27-Jan-15 09:03:47

which I think you should go on the course as you will be able to help the other students and probably the teacher as well....

For dd you are probably well up on OT and physio but if you win the lottery and want some recommendations for indi OT post or message

Oh - if you live in Kent/sussex use the Bedgebury Foundation

WhichWayWound Thu 29-Jan-15 20:54:51

I'm afraid I am a 'feckless help refuser', by virtue of being a working parent. The course is 6 weeks running at midday, at a push I can go in late/ leave early but bang in the middle of the day is impossible.

Afraid I'm not in Kent, but in an area of poor support. For example my friends 16 yr old with quad spastic cerebral palsy has been kindly offered an inclusion in a social club...for teenagers breaking out of drugs/ gangs.

Indi is just not happening either, she's one of four. Despite the views of others I've meet, I work for financial necessity rather than choice (yes...I mean the health visitor).

The side they don't see is a family with unusually high expertise in sen through the work they do and other family members!

[/rant]

senvet Fri 30-Jan-15 01:15:23

well definitely forget the course!
I had a SENCo once say that the child would be alright if the mother just gave up work to look after the lad when they had to exclude him.

I didn't know where to start really!

MeirAyaAlibi Fri 30-Jan-15 06:09:53

Welcome to the feckless help refuser club! (declined an autism parent information course for much the same reasons as you, am shortly to be CAF'd/TAC'd again- rather than just get the blinking ed psych to take a look- and will need to find a way of getting shot of them pronto).

The beauty of working is that you can refuse without refusing. "Can you let me know when you are next running an evening one? I'm afraid boss won't let me go because <insert excuse>"

inclusion in a social club...for teenagers breaking out of drugs/ gangs [shocked]

StarlightMcKenzee Fri 30-Jan-15 14:29:24

OP, ask for the course in direct payments so that you can spend the money on something that will have a direct impact on outcomes for your child. Say that you will ensure it focusses on your child's needs rather on justifying the provision the Local Authority want to provide.

StarlightMcKenzee Fri 30-Jan-15 14:33:08

'The side they don't see is a family with unusually high expertise in sen through the work they do and other family members!'

Then be prepared for hostilities when they find out.

Can you apply for an EHCP now then to ensure that by school-age the provision that she actually needs is in place?

WhichWayWound Sat 31-Jan-15 13:45:23

I'm so torn tbh, between 'she'll catch up fine' and 'I need to push'. I really don't know if we'll reach ehcp territory, in many ways she's fine. We're waiting on reg results which may in a way give more answers.

StarlightMcKenzee Sat 31-Jan-15 13:50:11

There's a really good assessment document where you can record and monitor progress. I'll see if I can find a link, hang on....

You can do it over a period of time and you should then be able to assess the pace of development iyswim.

StarlightMcKenzee Sat 31-Jan-15 14:05:12

https://www.whatdotheyknow.com/request/the_individual_assessment_of_ear#incoming-508346

Here. If I were you I would also get to know the SENCOP, and IPSEA. If you are wanting to access a Speech and Language Nursery or Language Unit in the Early Years for a boost before Mainstream, you will nearly always need an EHCP. These are best applied for BEFORE the child is in the education system for a variety of budget-related reasons.

WhichWayWound Sat 31-Jan-15 22:06:56

Thank you starlight...but I never really know on those things when it's a watch and wait/ big concern/ sort of concern, if you know what I mean. She'd score (at 27 months) in all areas on the low end 18-24 months (maybe missing one skill in 12-18 in play/ social) , but in the language 12-18, but very few of them.

I know she's a bit behind, but it means little to me in terms of the future. It could widen, shrink. How far is it off the average child? Do children rarely deviate, or is common to be up or down an age band? When is 'a bit more focus needed' reach the sen area?

In terms of progress, the physical gap has closed, but language has widen from average.

They also don't cover 'odd' (!). Like becoming unresponsive for periods, biting etc! Or 'wonky', such as meeting a fine motor skill with one hand but not the other confused

If I had to boil it all down, one thing worries me, her lack of understanding. She's nearly totally reliant on context and signing. Her verbal comprehension is maybe 20 words, BUT not in a sentence. They must be clear, sometimes with clues. 'bye' is solid, but 'sleep with daddy' result in a meltdown she doesn't want to go in her cot until you point at our bed, despite understanding 'sleep' and 'daddy' as separate words. Speech delay is common, but I never seem to meet anyone with a big comprehension issue, bar austitic children. BUT then that doesn't fit, she's great at tiny tiny non-verbal communication clues to help her. A flit of your eyes will tell her the object you want her to get, or a sad face stops her in her tracks worried for you and she is amazing at engaging even older children in simple games. She'll tap them for instance then step away quickly, before tapping again to initiate a simple game of tag.

senvet Sat 31-Jan-15 22:23:02

I once helped I kid I really thought was ASD. Turned out just to be severe expressive language delay with pretty average receptive language delay.

The brain is pretty complex, and the more the experts understand it, the harder it is for parents to get their heads round the reports, and then comes the big challenge of getting the school/wider family/friends to get it.

Have you had an expert SALT assessment? - you mention some salt findings, but was that a general assessment?

Sootball Sat 31-Jan-15 22:29:17

I have a hemiplegic kid
Who almost grew out of her hemi
Who had a severe language delay
And nobody could decide quite what she needed

But after fighting and fighting and fighting some more we have her fully statemented for executive function delay. She also started talking, and except for investigations for epilepsy is doing pretty ok.

Constraint therapy helped. As did ranting about a system which has failed her since birth, including complete hearing loss due to untreated ear infection.

Sootball Sat 31-Jan-15 22:29:55

Never did get the DLA forms in, wish I had. Private therapy was great but £££££

senvet Sat 31-Jan-15 23:22:17

brings tears to the eyes soot
Citizen's Advice are good on DLA - it is a ghastly experience writing everything your dc (or in my case, I) need help with, but it is worth it. If you don't ask you don't get.

It is a whole tree that gives up its life for one set of forms...

WhichWayWound Sat 31-Jan-15 23:30:04

gosh sootball, how old is she?

DD is now nearly not showing as hemi
seems to have a big language delay
is being investigated for epilepsy (atypical absences at GOSH)
has mild hearing loss (poss infection??? can't get her to agree to bone conduction testing, only sound field so maybe glue ear, maybe not, stable 40db)

senvet, no SALT. Well she's under them, even having 'further input' (!) but never SEEN one. Specialist nurse saw and fed back to make report, then peads at cdc have conferred with her, yet they've not met her. They have had input into report (pead first said nearly 18 months expressive, 12 receptive, then SALT lady adjusted this before written report). Had I attended the course I would have finally met her... but it was parents only.

Sootball Sun 01-Feb-15 16:56:23

Almost 5 :-)

senvet Sun 01-Feb-15 17:21:47

With the results you have from the medics, you can start accumulating the papers you will need in the next year or so for EHCP.

If someone is giving therapy etc then ask for a report. If they don't get round to it you can get their records via foi

Lots of people recommend keeping a diary so that good days, bad days and typical days are all recorded.

With luck, you will not need any of these because everything will go swimmingly, but the LA performance so far would suggest that you will be the only one with a full and rational set of records....

WhichWayWound Sun 01-Feb-15 20:05:45

sootball...

I'm trying to resist pumping for info!

Can I ask...?

When did you notice speech difficulties, dd seemed fine...then trailed to less and less. I think she was 18 months when she started showing issues with language/ possibly cognition. Before that it was motor skills, it was like she swapped issues.
Did your dd roll ok? Even though dd is practically unnoticeable, rolling is an issue still, was well over a year when she did it at all. Plus crawling up/ down stairs. It's 4 limb coordination which is still an issue, plus 4th and 5 th finger use.

Senvet, plan A is no need for an EHC. BUT I do have all records now. Except the cdc notes between teams, and they say they operate an 'open file policy' which I'll be open to testing out.

Priority 1 for me is hearing, until that is sorted how on earth can you unpick communication.

Sootball Sun 01-Feb-15 21:36:22

message me, i have had a shed load of good advice on this forum but cautious about discussing dd out in the open so happy to answer any questions in private smile

senvet Sun 01-Feb-15 22:24:20

good luck

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