Tenterhooks

I got a phonecall on Tuesday. To all intents and purposes it was good news, even excellent news, even a happy ending to years of sweat and stress and nail biting and polite negotiations beyond any previous understanding of my ability to remain courteous under fire.

Yeah, right, been there before. After the initial reaction (which was to whoop and go teary eyed as if I'd won the lottery or someone had declared world peace and enlightenment for all), I remembered that news of a ship on the horizon is not, actually, a ship on the horizon; nor even does the appearance of such a vessel mean much unless it then also proceeds to head towards you. Even then there is the issue of whether it truly is on a rescue mission or just blythely and ignorantly set on a course which will run you over.

Cynical? Moi? On the contrary, I have simply learned from bitter experience that it doesn't do to spend too much energy rejoicing on trust, when you are treading water in the middle of the Atlantic (and/or ocean of your choice).

This two day silence, rather these two days filled with high energy procrastination such as playing blogthings quizzes and blitzing someone else's house - these have been my equivalent of the Victorian dead faint followed by smelling salts and fresh air and a day on the chaise longue in the conservatory sipping beef tea, to recuperate. Honestly, there's never an asphyxiatingly restrictive corset around when you could use the excuse.

Did you know corsets were the cause of the earliest Western plastic surgery? Women actually used to have their bottom two ribs removed to allow the waistline to be so severely cinched. Yes I know, I said Western, I acknowledge footbinding came earlier, and head binding earlier than that. Yes, yes I know, I'm doing it again.

So, the deal (given that I'll only believe it when I see it), is this:

The policy makers at County got into a huddle, presumably decided I had them bang to rights for telling me that the school I wanted for son was 'full' and using that as the reason for refusing him a place. They may prefer to deny my assumption or refuse to comment, but for their own reasons they decided to approach the 'full' school yet again and ask them to accept Son as one over the numbers.

The new Headteacher (Yes! Miracle! Between the last time of asking and this one, a new Head stepped up!) - ahem - the new Head looked at the advices and this time said "Well, OK, we could squeeze him in, but he needs a full time INA (Individual Needs Assistant)."

The policy makers, allegedly, agreed to this and increased his statement banding and the amount of funding that goes with it, to allow for a full-time, all-year member of staff to be employed. Just like that, by the sounds of it as a snap decision during the same telephone call. After I've been begging and pleading for crumbs for over two years. %&(^£"&!!

So the school said.......................... yes.

And the final statement should be coming out to me this week, naming the school I wanted all along and giving son the provision I asked for all along.* Wow.

*At which point, however, I start nitpicking to make sure that the INA is listed as a provision in the statement, his/her hours and qualifications specified also, that the other provisions are specific and not the woolly drafts we had before, etc etc etc. Oh, and then I have to raise the testy subject of transport, ie stick my hand out for yet more money. See this is the tension of fighting on behalf of a kid with differences. Even when you so desperately want to throw your hat in the hair and shout Hallelujah, you just know it's not over. It may never be over. Hey ho.

I understand I am supposed to rejoice on the basis that I got the County to comply with more of the law than they usually do - that seems wrong somehow and makes 'victory' (however partial) a little hollow.

Son Supposes

This morning I sent Son to school in trainers because he 'misplaced' his school shoes, but completely forgot to send him with a letter of excuse for breaking uniform code. The unnerving thing is that as soon as I had given permission for the hunt to stop, he mentioned how handy it was that PE today was going to be athletics, so he would already have good running shoes on. Hmm.

Oh yes, and his chosen topic of conversation on the way to school, courtesy of having seen the news, was whether China etc were really going to join forces with America (because they had a war once, you know, says he) or whether they want to take over. Whether the takeover will be in business dominance or whether it will involve transplanting politics and communism, and whether, as the UK didn't go to war with them and we had a deal about Hong Kong, and we're sort of friemds with everybody, might we be able to stay neutral and friendly and not get communised/blown up/put out of jobs. At 8.15 on a Friday morning.

Email #45

Dear Ms New-caseworker

Thank you!

My understanding was that, for most schools, some staff would be on site for part or all of the 'holiday', particularly admin staff and usually also 'main players' like the Head. The delay this would involve was not made clear when we spoke, or, grateful as I am, I would have reiterated my request for the statement to be issued during the Easter break, irrespective of these new developments. I rather thought I had done just that in any case.

Are we near to the eight weeks yet? I am having trouble finding the cover letter that went with the note in lieu, which does not, in itself, have any date on it. Could you remind me, please?

Yes you are correct, I was at one time panicking that we would settle things in time for a proper period of transition, now I worry that we may not have this settled before schools break at year end. Given that the application for assessment went in to County in July of last year, it has been a long time to be so fraught.

Given the situation could I please have either another 'interim' proposed statement (if that's what systems require) or simply (preferably) copies of the altered pages, following our meeting on March 24th. I would be grateful - even by email.

For your information, I sent copies of the initial proposed statement and the advices that were attached to the previous note in lieu to N-H School. I have received acknowledgment and am waiting to hear from them to see whether we will be invited up for interview. You know I have to repeat for the record that I requested P for its layout, as the only school I was aware of which provided the national curriculum and yet was designed in a way that would significantly reduce danger spots and triggers. It was a 'best of' situation. Now that I am aware of the Priory schools, ie aware that there are facilities which offer the full national curriculum in a setting specifically designed to allow accessibility to students with aspergers, without there being a mix of syndromes and conditions (which would have done nothing for his self esteem), I may yet request that N-H be the named school.

Son will not willingly consider any local school other than P, yet when I told him he had a better chance of going there than to N-H, he was very disdainful, saying that even if the teachers were nice and the building was quiet, he would still be the weirdo and the geek and the one who got kicked at breaktime just for being there; so you see, I am in a bit of a spot.

On that note however, someone outside of all this recently told me that Son could and should have been invited to attend the last review meeting; that he has a voice in this and that his opinions should be taken into consideration by the system directly, rather than second hand via me. I imagine it is too late to arrange this now without slowing things down considerably, besides, he currently has his heart set on a school which he hasnt even visited or been invited to view. I simply wonder, ought I to have been bringing him along to the meetings all this time?

Thank you again

Best Regards

Cheryl Baggage

Email #44

Dear Mrs White

As you are aware, the School Admissions department have indicated that P is full for Son's year group this September; when we last spoke, at the very end of Term, I said I would discuss with senior managers here whether there was any scope for going back to P, and they agreed that we should pursue this - but we need to speak to the Head and the SENCO. We cannot do this when the schools are shut for a holiday. I understand that you are anxious to have a final statement for Son - what we are trying to do is meet your school preference before we finalise.

I hope this clarifies things for you.

Ms New-caseworker

Email #43

Dear Ms New-caseworker

Thank you for your letter dated 18 April 06 to advise that the SEN team will be liaising further with P School and the County Hall Schools Admissions team over my request for a placement at P for my son.

I am confused.

Exactly fifteen days prior to the date on your letter, following our emails (below) you telephoned me to clarify that agreement to consider a special school was not agreement to approve one.

During that conversation I advised you that one of my resons for thinking I needed to go to tribunal was that the National Autistic Society had informed me that a school 'being full' was not an acceptable reason for denying placement. Rather they said that, according to the code of practice (8.85), going over the nominal admissions number might be incompatible with the efficient use of resources / education of the class, particularly due to availability of physical space for equipment, and that this would have to be investigated by the County.

At that point, in spite of the many email references to a place not being allocated because Peacehaven was 'full', you advised me that the County would indeed be making such investigations. There was no mention whatsoever that this may affect your response to my repeated request for the final statement to be issued prior to the beginning of this current term, ie prior to todays date.

Please could you advise me:

1. Why I have been sent a letter confirming what was already said by telephone so long ago
2. Why it has taken fifteen days to establish actions that I was led to believe were already in motion
3. Why the letter speaks of negotiations with Peacehaven in the future tense - ie why the County 'will be' doing these things and has not already started
4. Most importantly: Why this has delayed the issue of the final statement if, as you said in your email of April 03, NEGOTIATIONS CAN CONTINUE BEYOND THE DATE OF ISSUE OF THE STATEMENT.

Sincerely

Cheryl Baggage

Email #42

Dear Mrs Baggage

- just to confirm your email has arrived but unfortunately the attachment was not there - could you resend? If the attachment was definitely attached on your original email there could be a problem with one of servers. Alternatively you could fax it on xxxxx xxxxxx.

Kind regards


PA to the Director of Children's Services

Typical.

Today was supposed to be spent clearing house, sorting out, laundering and pottering.

Instead today was spent on five long emails back and forth between myself and Son's caseworker, with at least as many long phone conversations with the lady at the NAS in between.

The County are refusing to pay up for an individual needs assistant all day. They are also refusing to name the mainstream school I selected, or to make the provision for him any less than vague until they have chosen a school and got the school itself to say how it will make this or that provision. For example 'access to a workstation' could end up meaning he might see a desk on its own, with no headphones, no keyboard, and he might 'have access to it' for five minutes every term. It wouldn't be that daft but thats as vague as they are being right now.

The thing is, I wanted mainstream. I wanted mainstream because I didn't think the kind of special school that was worth looking at actually existed. Sure, mainstream would mean that my son was condemned to do twice as much learning as other kids during the day - learning to deal with distractions, with life as an Aspie amongst NT teenagers and all that entails.

Someone very recently pointed out two schools with the national curriculum (and more) that cater just to aspies. No being thrown in with a wide variety of abilities or issues like in an mld or ebd school, just a school full of kids on roughly the same level, and more importantly a school full of staff that really understand the condition.

Without even getting to visit one yet, Son has set his heart on them. I did point out that now that we have mentioned special school, the LEA seem to be much more interested in trying to get him into the one mainstream school, especially since I pointed out that its qualities (wide corridors, no bell, staggered breaks and other things) could all be counted as provisions against his needs (trouble with cramped or confined spaces or a lot of movement or sudden noise - he doesn't freak - he just gets a bit 'on stage', clumsier and a deal less thoughtful - he gets into a state where accidents happen around him and he finds it as tiring and stressful as anybody).

Anyway the county have seemingly backtracked from saying there is no chance of getting him into that mainstream school and are now saying they will 'keep fighting' and there is a slim chance. Tut. Suddenly the closed statements that the school is full have become open ones indicating they mean to quiz the school on why being full means they can't squeeze another one in.

I told him. He is not best pleased. His only comment was:

"Oh yes sure, lets have a think - on the one hand we have this brilliant small school full of Aspies who are just like me and will understand me and I will be normal for a change, and on the other hand we have a real school where I will still be the geek and the weirdo and get kicked at breaktime. So the County are going to put me in which one? The crap one of course. Oh bloody brilliant."

Sometimes there just isn't the right moment to tell an eleven year old about his language.

After all that, the network cable at home decided to die and take my network card with it, so I am sat at Husband's machine to write this.

Not a good day. Will try again tomorrow, but I may just start a new blog to pull out all my references to this fight for SEN provision and add all the emails to it. The way things are going just now, it would seem foolish to rely on my email account as the only storage place for all the stuff I'll need for tribunal.

Tags: Aspergers, SEN

Email #41

Dear Mrs New-caseworker

Thank you for saying, below, that the LEA will consider special schools for my son, even after the issue of the requested final statement; I truly appreciate that.

Purely for information:

I have just managed to get hold of 'Special School' in Frome, by phone, even though the students are on their break. They do still have some places and I now have a brochure coming in the post. It does sound perfect, in as much as every observation my contact made about 'these students' seemed to perfectly mirror what I have heard said so many times about my own son.

They have asked for copies of the speech and language report, Ed Psych's report etc and also of the proposed statement, but are concerned that the provisions in part 2 should be clear and unambiguous in describing the type and quantity/frequency of provision. I understand they need this as part of the acceptance criteria, so from my perspective this does nothing to change my intent/need to appeal about the provision in part 2 of the statement.

Also for information, my contact is Mrs J on telephone number xxxxx xxxxxx.

Cheryl

Email #40

Dear Mrs New-caseworker

I'm sorry - let me clarify. I am currently unable to reach the two Priory schools which I understand may be on Easter break and which I have only just discovered to be both Aspergers specific (not a full range of autistic spectrum disorders) and to provide full access to the national (i.e. mainstream) curriculum.

In either case, from their websites, both require a child to already have a statement in order to be considered for a place.

As to the proposed statement:

I consider the provisions in part 3 to be both very ambiguous and inadequate to the needs outlined in part 2.

I request P school to be named in part 4 as "there is nothing in law regarding admission numbers/schools being full" (quote NAS advice) being used as a reason for non admittance.

Please finalise the statement, giving me right to appeal to SENDIST.

Sorry again, thank you again.

Regards

Cheryl

Email #39

Dear Mrs Baggage

Thank you for your e-mail and kind words; you have certainly been clear re: wording of the statement and your wish for a placement at P, and I hope that we have been clear about the lack of spaces at this school. However, just to clarify once more - in the absence of any other school preference or representation from yourself, and being unable to name your first preference school (P Community School) as it is full in Son's year group, the SEN team are endeavouring to meet your second preference school (R Community College) as indicated prior to the issue of the statement, as we are aware of your many concerns regarding a placement for Son at his allocated secondary school, S. If you wish us to pursue a placement at R, we will do so, and will liaise with our colleagues in admissions over this - but otherwise we would name S as this is Son's allocated secondary school. However, if you make a representation for an independent or non-maintained school prior to the issue of the final statement we will consider this. Once a final statement is issued you have two months from the date of issue in which to submit an appeal to the Tribunal - so there is scope for you to explore other special schools, for you to come back to us if you feel any other school to be appropriate, and for us to keep talking!

Best regards

Mrs New-caseworker

Email #38

Dear Mrs New-caseworker

I want to thank you again for the honesty and helpfulness you have personally shown to me through all of this. It seems that I will almost certainly appeal the decision.

I do have to make one correction to your email - R was my second choice school at the point in time when application for statement had failed and a note in lieu was to be issued - way back at the beginning of what has been a huge learning curve for me. I was then much less informed and taking account of the advice of available experts - to be specific the three schools that we visited were recommended as possibilities by the ESCC Educational Psychologist.

When the admissions procedure was (due to be) clawed back from general admissions and given to your department, owing to the decision to statement after all, I was sent a new schools application form to fill in and I understood that it entirely superseded the earlier one. On that one I listed P only, and P is the only mainstream school that I asked to have named on the statement, so I am a little confused whether I have a second choice in R, or whether that ought to be 'had', past tense.

It is rather a turn of events that, owing to timings, the general admissions department could not be stopped from allocating my son a place as a non-statemented child, after the decision to statement had been made; that they allocated R, a school which, now in full possession of the facts owing to your letter to the Governors and the legally required attendant paperwork, feels as I do that Son's needs are not matched by the provision offered and that their school may not in any case be the best equipped to meet his needs.

I am very concerned and confused that S has, according to your email below, become the allocated school. It is the one school that I have constantly cited as being perfectly unsuitable to my son's condition at a design level - a main road between buildings, lots of build-ons, pressure points and small corridors, every possible design flaw that seems purpose built to trigger 'stimming' in a child on the autistic spectrum, including the use of a bell. I appreciate that you wrote to their governors of your own volition (presumably?) because we fall within that catchment area, but am incredibly concerned that R can envisage problems which Seaford can not.

It seems I am caught between the devil and the deep blue sea here, not least because of timings. It is such a shame that the junior school has now applied for assessment for my son on two occasions; both times the County appeared to have lost or not received an item of paperwork just at the end of a school year - both times reproduction of such took us about a week into the school summer holidays and I was then, each time, informed that this negated the ten week response time which was instead re-set at 12 weeks after the schools reopened, ie 18+ weeks in total from application to decision each time. This, with the change of decision this time round, has meant that the two applications have ended up stretching over almost two years. We have run out of negotiating time - I wish it wasn't so but feel I have done everything possible and stated my case clearly.

Again I really appreciate your help, I acknowledge your honest and genuine attempts to accomodate my requests within the remit given to you by your department and/or employers, but I feel I have made my requests clear - for unambiguous provision laid out to match and provide for my son's established needs, for unhindered access to the national curriculum and for a school environment condusive to peace and order for an aspergers mind, as a provision which not only allows him to access his education but also to access any other provision once eventually clearly established.

I look forward to receiving the final statement as previously requested, within this Easter break, please.

Best regards

Cheryl

Email #37

From SEN Caseworker

Dear Mrs Bagage

I can confirm that your understanding of the response received from schools is correct; as you noted, we need written responses (particularly as R are saying that they feel the current statement band would not be sufficient to provide Son with the level of support they feel he needs) and can then finalise the statement. When you receive the final statement the accompanying letter will explain how to appeal to the Special Educational Needs and Disability Tribunal against any part(s) of the statement, including the school named in Part 4 - but of course we would far rather try to work with you and avoid an appeal if at all possible

When we sent you the proposed statement you should also have received booklets giving details of all East Sussex maintained schools, of non-maintained special schools and of independent schools. These booklet give brief details -including, where applicable, the type of special need that the school caters for.

If you wish to make a representation for any other school, we can consider this; to date, we have had your preference for P (1st choice)and R (2nd choice),and have consulted the Governors of these schools and of the allocated school, S. In the absence of any other school preference, we will endeavour to meet your second preference as your first preference school is full in Son's year group for this September.

Mrs New-caseworker