Statement - I've been told DD will need one, but do we have any chance of getting? Very long, sorry.

[LemonGoby]

Hi, I am a relatively new poster to mumsnet. I know there is a huge amount of knowledge and support on this board, and I am hoping someone might be able to give me a pointer or two with our current situation.

DD (3.7) has no diagnosis but I am convinced she has an asd, and often wonder about inattentive ADD and occasionally SPD too. First signs were onset of meltdowns at childminder's from 2.3 where she had previously seemed very happy for more than a year and at 2.6 CM said DD not interacting as much with peers as she would like to see (which I kind of ignored as she was so young and because she seemed to have no troubles interacting/communicating at home ). Then had lightbulb moment at 2.9 when I realised that so much of her 'amazing' speech was echolalia and that she was actually far less conversationally able than her peers, and then that certain other behavioural traits were perhaps not merely incidental, but all part of a wider, emerging picture.

The GP referred us to the CDC and we had a stage 1 assessment with a paed in July, and on the back of this came an initial SALT assessment, OT assessment and audiology (due to hypersentivity to certain noises). All these 1:1 appointments came back as there being no obvious concern, but we should wait and see how she did at nursery in September. And having started there her problems have really become clear (frequent zoning out/unresponsiveness to both children and staff, rejects overtures from peers and seeks to withdraw to book corner, cannot really sustain a conversation with peers - they make a comment/ask something and she replies with a non sequitur, usually a line from a book or one of her self-scripted conversational topics. She also is hard to engage in group activity and can't/won't remain focused on an activity without 1 on 1 support from one of the staff. Never seeks out new activities but returns to familiar ones, does the same puzzles over and over, knows them by heart etc. Doesn't really have meltdowns as such, but we do have lots of anticipatory anxiety on the way to nursery, particularly around the garden/playground time which she finds very hard, but staff report that she is never unhappy for long after arrival.)

Anyway, we are due to be sent an appointment for a stage 2 assessment and diagnosis at the CDC later this month. Nursery say she will need additional help in school and are urging an application for a statutory assessment and statement. They have sent a report to the CDC of their observations of her over last term, which made gut wrenching reading (prefers objects to people, shows affection to close adults, ie. me, but not through choice etc.). She was also observed at nursery by the SALT, who realised how differently she presented there from the 1:1 assessment.

So, sorry for the huge background info, but we are basically waiting for the diagnosis so we can feed the results into the application for statutory assessment. I have been advised on here that many LA's are turning down first time applications, and that it is very hard to get an adequate statement. I am just wondering if anyone has any wise words or similar experiences to share. I am panicking that she simply won't cope at school without additional support, but also that her needs won't be considered 'enough', and that we won't succeed in getting any for her....

Apologies for vast length of this post, it's just all come tumbling out!

Lemon - I have been told that you dont need a diagnosis for a statement and that statement is based on needs. I think you should start the process

My gut feeling, and I'm always cautious about saying this, is that you'll get a Statement for her.

You can apply yourself, by writing to the Chief SEN Officer at your Local Authority. She is young enough that the reports from the Paed, OT, SALT should be enough to trigger the Statutory Assessment.

There is a template letter on IPSEA. I would recommend that you use that model template, adding in the relevant points about your DD. You can use bullet points to highlight the difficulties which are apparent, from your OP above.

Once you've written that, photocopy all the reports you have and send the letter, together with the reports, to your LA SEN Officer and use Signed for delivery. That way, you have evidence that they received your request.

It isn't strictly necessary to do that, but I really feel that it shows that you have serious concerns and have thought about your decision to ask for a Statutory Assessment.

They will acknowledge your request, then write to the nursery for information about their concerns.

They have 6 weeks to gather evidence and decide if they are going ahead with a Statutory Assessment. If you write the letter today, and send it tomorrow, they will have to give you a decision by Friday 21st January 2014.

If they decide to proceed with Statutory Assessment, they will ask you for more comprehensive advice about your DD, plus ask for advice from the paediatrician, SALT, OT, an Educational Psychologist, Nursery and anyone else involved in her care.

They would have 10 weeks to gather that information and decide if they are going to issue a statement. If you were to apply tomorrow, then they would have to make that decision by 2nd May 2014.

They then have 2 weeks to either write and send you a proposed Statement of SEN (if they've decided she needs one) or a Note in Lieu (if they decide she doesn't need one). They would have to have that document with you by 16th May 2014.

Then, they have to give you 2 weeks to consider the documents, and discuss any issues you raise, and they then have 6 weeks to adjust and finalise the Statement. This means your Statement would be finalised by 11th July 2014

So, it's really important that you get started very soon, because even if you apply today, you'll only get a Statement 1 week before the end of the school year, which doesn't leave much time for preparations, especially if she requires 1:1 support at school.

Write that letter!!

Wow, thank you lougle for taking the time to write such a very comprehensive and helpful reply. I have only had vague notions of time frames etc. in amidst all my general worrying and feeling hopeless about all of this, so it is fabulous (if scary!) to see all those dates in bold and to know that I really need to act immediately to give DD a fighting chance. How lucky that I wrote my post today and not in a week or two's time!

Thank you also, salondon, I thought it might be worth waiting for a diagnosis before applying for SA as it was all more info to feed in, but as we don't even have a date for dx yet it would be silly to wait. In fact, as the LA have a set number of weeks to gather their info, presumably the results of a dx could be fed into that part of the process instead...

Many thanks both!

I'm glad it helps, LemonGoby.

Do you have any idea of a particular school you'd like her to attend?

You'll need to apply as usual using the Common Application Form, so that if you don't get a statement, you still get a chance of the schools you prefer. However, if they do issue a statement, you'll get to name a school and as long as it can meet the needs of your child, they have to accept her, regardless of whether they are 'full'.

What do you think her cognitive function is like? Is she delayed in her development, other than the ASD type features? Is she understanding language and following instructions? Is she recongising and naming colours, numbers and letters? How are her self-help skills in washing, dressing, etc? How is her awareness of danger?

Lougle, sorry to go quiet - I was busy writing my letter and getting all the documentation together. Sent it all off today, registered post. Thanks so much once again for all your help and advice . So now we wait....

We also have to get her school application in very soon. My first choice is no longer the highly rated but huge primary which is our closest - I have heard bad reports about their Senco, and she sounded frankly disinterested when I spoke to her. I have a better feeling about another school in the area - not as highly rated by Ofsted, but highly rated by parents, not quite so big as the other (though still big) and with well respected and very nice Senco, who has already been very helpful and given me bags of her time.

Hmm with regards to cognitive function, I really go round in circles trying to work it all out! She has been counting and recognising numbers, colours and letters for a long time
(since before 2yrs.) She has been taught the phonetic alphabet at nursery and is beginning to sound/spell out words. She is very interested in reading and books, and has memorised many favourites in her 'library' practically verbatim, and 'reads' them to herself, turning the pages at the corrects points. If I ask her about what's happening she definitely understands the gist of the stories, although not necessarily the meanings of all the individual words. The SALT full assessment had her as being bang on average or above in receptive and expressive language.

So on the one hand I think she understands pretty well, but then often I wonder as she gives me random answers to questions. In my own experience, her expressive language ranges from (IMHO) reasonably impressive (using a variety of tenses and involved sentences, long words etc) to the frankly bizarre - non sequiturs and un-situated, often scripted (by herself), references to minor/minute details of things she has read/done/seen on tv, that would be utterly baffling to anyone other than me and dh as we obviously know the background context.

She has been potty trained for over a year, and can reliably manage the whole thing independently. Gets dressed and undressed on her own but needs constant motivating pratically for each item of clothing (reward charts, promise of time on iPad etc) otherwise it just doesn't happen or takes FOREVER. She gets too distracted. If I ask her to get dressed while I am in shower/in another room, I can expect to come back and find her either still in pj's gawking at herself in the mirror, or naked with one sock half on, looking through a pile of books, as if she has forgotten what she is supposed to be doing. She will then complain she is cold but not think to get dressed to get warm! She gets frustrated very easily with clothing too - if a very half-hearted attempt to do up a zip fails in the first 2 seconds we have stormy tears about it being an impossible task.

Her awareness of danger seems okay as far as I can tell. She has never bolted and when scooting always stops before the road. I would say she tends to caution and fearfulness rather than recklessness, although it all depends on her mood - she demands to be pushed to giddy heights on swings, and will swing forever if allowed, but doesn't seem physically very stable (often stumbles/lurches), and panics if she loses a footing etc.

So, I am am not always sure what her cognitive ability really is tbh! (Sorry for another essay.)

No, that's great :) I was just trying to get a picture in my head of whether you were aiming for MS school with support, or special school.

It sounds like you're thinking of Mainstream?

Yes, we are planning on going for mainstream, but this is not least because we don't know where to start with special schools, and haven't really got an idea of whether she would do better in one than in MS (very clueless!). There are a couple of SS close to us, but when I phoned one I was told that they only took children on the lower end of the spectrum, and that the majority of the pupils were non-verbal, and my DD wouldn't qualify. If a child starts in MS and really doesn't cope at all, are there options to then try and move them into a SS?

Thanks so much for all your info, btw, I feel better informed already!