Praise Be For Family Support Workers

[WoollyNewty]

So Alex is going through the process for diagnosis of Aspergers and the Paed was fantastic and he has his SALT assessment coming up and also someone going to watch him for half a day in school.

But from the school I've been getting jack all of anything and have just been told they can do nothing (no support, no IEP, no one to one, no nothing) until he gets an official diagnosis.

I got upset over the whole mental maths thing they were doing to him (i.e torture) and they said they now had a part time Family Support Worker working there (about time too) and did I want a referral. I said YES.

So I met her last week and we got on amazingly - we are very alike. I said why do you think I'm here and she said 'all they've told me is you have problems with Alex's behaviour' . So I gave her a brief (took about an hour ) synopsis of what was going on with Alex and the rest of my life and trying to work 3 jobs, deal with another child, deal with my mum, deal with my emotions and my ex etc AND the constant battle I feel I'm in to get Alex even vaguely understood by the school.

She was like 'wow'. She said firstly you clearly do NOT have any problems yourself with Alex, you totally understand him. We need to sort the rest out - she can't wave a magic wand but we talked about coping strategies and how I was like a glass of water over flowing with all this 'stuff' being shoved into it and nothing to mop it up with. It was really helpful. Turns out she's also a Child Protection Social Worker in a previous life - so she's seen it ALL.

Then she said that basically (and this was totally my gut feel) Alex's school are just totally out of their depth here. They are 'lovely little village school' with 'nice', 'normal' families and 'nice' 'normal' children and if you've got a little girl who loves reading and writing nice stories and reading out poems in assembly and you have a lovely 'just like the adverts' home life then the school is great. It's a great place for academically 'normal' children whose families need no support and get stuck in at the Fete etc etc. If you have a child with additional needs it is frankly.......shit.

The SENCO is a teacher - so no stand alone SENCO time - and young and inexperienced.

The Head is unsupportive, coasting to retirement, been there 30 years, nothings going to change.

Alex's other teacher (the vile old fashioned one) has STILL not been changing her ways. Alex says she still won't repeat instructions, shouts and now has been keeping him in at playtime when he hasn't finished his work (he's not slow because he wants to be 'slow' you idiot - he's 'slow' because the great big noisy classroom and your foghorn hollering voice are frying his brain).

The Support Worker said this was unacceptable and I had every right to take it to the Governors.

She said at the other school she works at Alex would have one to one support EVERY DAY, he'd be with 'other Alex's', I'd be able to go to parents group for support etc - but sadly that's not an option as it's in a different town miles away and not a 'special school'. But just goes to show you what could be.

So we arranged to meet again yesterday and in the meantime I went back to where I used to live. The friend I stayed with has a child with speech delay - nothing major - but the support she gets and the help he gets -wow. He has an IEP. She meets with the team every 6 weeks. She gets total communication and reports. He gets one to one help every day....etc etc.

Hmm.

So by our meeting yesterday I was feeling ever crosser. She ended up spending TWO HOURS with me!! God love her.

She met Alex. He was leaping around then wrapped in a throw on the floor. She said 'oh he's self swaddling and then grounding himself'. I was like 'wow - someone gets this!'. She talked to him a bit. She saw his drawings and was like - she said '7 year old just DO NOT draw like this'. Then they had a conversation about the Solar Storm and then Eddie Stobart lorries.

She basically said he is very bright, he clearly has additional needs that are NOT being met, the school DO NOT NEED A DIAGNOSIS to meet these (or try to). They should have done loads of stuff, ages ago - they have misinformed me again and again and again - through utter lack of experience basically. THE FUNDING IS THERE - but they've never even asked for it.

She's only been there 2 weeks and already she's working with 10% of the families from the school (small school so not many but a high %) so they are clearly NOT supporting families well and it's all been hidden away. 'Everyone at this school is happy' is there kind of 'la la la fingers in ears' setting.

Last week I picked Alex up and in the middle of the playground opened his book back and there was a folded over piece of A4 paper in there. I thought it was a drawing.

NO. It was the school's report on him for the Paed. Not even in an envelope. Saying things like he's silly, monotone and emotionally flat. Nicely presented I thought. Oh and it was full of typos and grammatical errors . I showed it to the Family Support lady and she was like 'WHAT is this!?! This is appalling - it's not even done properly, why didn't they ask for help or support writing it? They have access to this information IF THEY ASK. They haven't even mentioned his sensory needs for god's sake!'.

She said because Alex is not disruptive or violent they stick him in a corner and the horrible teacher just forgets about him. The other one is trying her best but is unsupportive.

She said I'm going to have to fight for him his entire life but right now we need to sort this bit out and we both kind of agreed that maybe I need to start looking at other schools. She said she'd come with me (wow!!). This massively disrupts the rest of my life (in big big ways) but it's too important to gloss over it. If I find the right school for him then I've got the battle to get him in (they don't think he'll get a statement but I can appeal on ground that his current education provider can not meet his needs) and then I've got to get his brother in....... The school down the road from me (where I wanted him to go when I moved) had a waiting list of 60 children the last time I called .

We basically agreed that other than reading so far his 'education' has taught him nothing much and given him a huge load of anxiety. He learns more in an hour with me doing something.

Changing schools is big stuff so we need to first of all ask the current one what it can do - so I've been asked to call an urgent meeting with the SENCO and Support worker. So I went in this morning and got told 'oh you don't need to worry - he's where he should be academically'. Waaaaaaa!!!! It's not about that - he's frantically paddling about like a drowning cat and just about keeping up and at what cost? She was like 'well it's very hard to do a meeting those days, I teach and I've got cooking club.....' and I said 'I. AM. NOT. HAPPY' and told her a few examples and she was like 'oh, right, erm I'll talk to the Head'.

Now I'm waiting for a call.

I can not even begin to tell you how amazing it is having someone on your side - and someone who says basically 'diagnosis or not your child HAS GOT ADDITIONAL NEEDS' and 'wtf are the school playing at??'.

Never a dull moment

If you've got that far then thank you but I just had to get it off my chest - and if the likes of Red are around and have any input that would be fab.

I need to now list all the things Alex is struggling with in the classroom and what I want done about them.

The biggest one BY FAR is the noise. There are 28 children in a portakabin and he can not cope with the noise. I told his nice teacher and she agreed - she said she's noise sensitive and struggles in there!! I mean what can they do about that? Gag the other kids? Clearly not so do I then need to find him a 'quiet class' somewhere!? ARRRGHHHHH. It makes me SO MAD that the rest of the world (well most of them) do not understand this!!

[Franny]

Glad the meeting was so positive. Sometimes the right school and the right teacher can make the world of difference and, when that happens, it'll feel like coming home. Good luck with it all and keep us posted. Hopefully, someone wiser will be along in a minute!

[WoollyNewty]

Lol - I always like hearing from you Franny! I think your DD and Alex would get on very well!

[Lilybett]

So glad that you have someone so supportive on your side hun. Good luck with it all, is ex-DH being supportive too? x

[WoollyNewty]

Yes Lily - he is supportive. He loves Alex with all his heart. They are so close (thus how come he lived in my house so long after the affair - I should rename myself 'Buffer' - but the personal cost is massive...).

He is always several steps behind my processing stuff (my brain moves at hyper-speed and I literally race away with ideas and plans and 'we need to do' stuff) and I think he's a bit shocked about some of it but he's not happy at all with the things I'm not happy with and he just wants Alex to be happy. Occasionally I get glimmers of 'oh but I was like that as a child - it doesn't mean he has a problem'.....but not persistently.

If the school try and deny saying stuff like you can't have an IEP without a diagnosis or that Alex had an 'attitude problem' then he was there to witness to it all and will back me up.

[schnapps]

I can't give any advise but just wanted to say I think you are a fabulous woman and I am in awe of all you have dealt with over the last few years.

I hope you get the help you need for Alex and does feel as if you finally have someone on your side.

[redhed]

Hello darling.

Will probably do that thing I do where I post a response in instalments because I keep thinking of more stuff. So, Episode 1:

Yes he needs a new school. You sort of knew that anyway, it was just that moving him seemed too hard - but now you have a) validation and b) support to fight. So YAY for the FSW. Like Health visitors, Social Workers and Ed Psychs, they are very very variable but the odd one is solid gold and it looks like you've got one of those.

A few comments on her comments. She is, of course, right that the school can and should support him pre-diagnosis. Educational support in school is based on educational need, and you could never have a diagnosis at all and still need and get extra support throughout your school career. The school has 2 issues: first, without diagnosis they can't be sure what help he needs, because they have little SN experience so they need a LOT of guidance. Second, without diagnosis, Evil Teacher (in particular) will not believe he has a real problem, and will put everything down to attitude. If SENCO was worth her pay grade (she's paid more for doing this...) she wouldn't let that stop her, mind you. Because she isn't, she's relying on being spoon-fed by the Local Authority, and they are probably telling her their policies (no legal standing) not your rights (plenty of legal standing) or the school's.

Your SENCO may improve a bit because there is a requirement they all pass a 1-week training course by Sept. Having seen the contents of the training course, too much of it is about making life easy for the school/Local Authority, and not enough about helping the kids. But still, if she's due extra training and gets it, that may upgrade the help you get in this school while trying to sort out another. Plus any interim "official" info you can get to her to back you up - maybe your FSW could write a quasi-official report? If they have so little experience they may well be swayed by that.

I'm not sure I agree with FSW that he won't be statemented. He won't be easy to statement, because unfortunately statements are about Educational need and if he's within expected results it's hard to show there is unmet Educational need. The law says that provision has to be "adequate" and no more - schools have to provide good or outstanding education for all non-SN pupils or else, but for SN pupils it must merely be adequate. I think any argument that his education is inadequate would rest on the absolute lack of progress (ie historical test data from school I guess) plus diagnosis/report to show that this is due them not meeting his needs rather than an attitude problem or whatever. If diagnosis is not forthcoming soonish, then it's a question of whether it is worth paying someone to do a report privately. Something worth chasing up is the sensory aspect: if he needs to learn in a more controlled environment then that can be a reason for statementing as much as educational issues. OT will be the one to assess sensory needs and it's a bog-standard questionnaire so you should be able to get them to run that without too much protest.

So. You do NOT need a diagnosis to get support. But. You may need a statement to get a different school or to force support out of this one, and you may need a diagnosis to get that statement. I think it's worth having a go for one. I'm not sure about her "he won't get a statement" comment - though of course she knows the local process and I don't, LAs routinely refuse to assess and then back down at tribunal: having a bunch of obstructive and often illegal policies unfortunately puts a huge % of parents off and they save enough money there to fund the kids whose parents do have the wherewithal to fight them.

But you've got more than enough on your plate already. I think I'd start off with 2 very basic things: what schools could he go to? Find out what the local schools are like and decide what you are fighting for first. Then look at what help you can get, both locally and nationally. There are 2 helplines I can think of: IPSEA and SOS-SEN. Google those guys. Ask parents at your local NAS branch what their experience is. Find out if your local Parent Partnership (SEN process advocates, paid for by the LA so of varying use and independance) is any good. Work out who is going to be on your team going forward and take all the advice/support that you can.

NB - re: sensory issues - does he have any ear defenders? We use these (though in our case it's to protect our hearing from the noise DD1 makes, lol) and a LOT of the kids in DD1's school with ASD wear them. If nothing else, your SENCO should be able to force Evil Teacher to let A wear them in class. Tell her it is Disability Discrimination if she does not, and you do NOT need a diagnosis to take the school to court under the Equalities Act.

[bluekat]

You sound positive and relieved and that is great.

I hope this person can help Alex and you get the best out of the system.

BKx

[WoollyNewty]

Thank you thank you Red!

Yes I do have rather a lot on my plate - grr. But one step at a time.

This shocked me:

The law says that provision has to be "adequate" and no more - schools have to provide good or outstanding education for all non-SN pupils or else, but for SN pupils it must merely be adequate.

So is there no weight given to his emotional health?!? Basically he's doing OK - you know 'ok' but at what cost!?

The ear defenders idea is great - yes he already has those exact ones, in his bed!!! In case a firework goes off. However I think he'd be really really worried about wearing them at school -it would take a careful approach but I shall talk to him about the idea and see if I can make it 'safe'.

Plus it would be a visible reminder to Dragon-Breath that you can't just shout at him......

Interesting what you say about the OT because they have refused his referral....His mobility etc is good so they won't see him. But there is a helpline number you can call for advice

There is a school 10 mins walk from here which has 'outstanding SEN provision' and it says that the children with SEN make outstanding progress etc etc. They have a separate classroom for SEN and a sensory room. Our printer at work has an autistic son and he goes there and he really really rates it.

Unfortunately (in my opinion!!) they also have an Outstanding Rating from Ofsted and various national awards so every parent in the county is trying to get in there - ARRRGGGHHHHHH.

I'm going to make an appointment there though and ask to meet the SENCO etc and also the other one round the corner (which is close) which has a lot of SEN pupils but it's quite a hectic looking school with a lot of social issues and I immediately think 'woah - mind blowing'.

[WoollyNewty]

p.s Red when you say moving him seems to hard I basically burst into tears. It will have massive impacts on my life - I might have to give a lot of stuff up. And I don't mean little things. You know when you try and balance everything up and take the long view, how do you know? That's a rhetorical question by the way....

[WoollyNewty]

Red - about the statement, she seemed encouraging that he could get in without one as long as we do it a certain way but of course if we don't then we'd have to go that route.....

BUT do you have any idea where that would leave the sibling?

Would Spud get a place (or a potential place) because his brother did?

Because otherwise HOW is it going to work - Alex could potentially be at school 10 minutes walk away (and you can only walk -it's in a pedestrianised bit of the town centre) and his 4 year old brother could be at a school in the middle of nowhere 10 miles away..... I know I'm racing away mentally but I feel really aware that all the time Spud is kind of over-looked and his needs glossed over - it makes me cry actually. Raw nerve.

[redhed]

So is there no weight given to his emotional health?!? Basically he's doing OK - you know 'ok' but at what cost!?

Well, it's not that there is no weight given, it's just that it's a different argument. In the same way that you have to "fail" educationally before you get the correct educational provision, you have to have evidence that the environment has caused difficulties (eg school refusal) before they take much notice.

Interesting what you say about the OT because they have refused his referral....His mobility etc is good so they won't see him. But there is a helpline number you can call for advice

Well worth a go. If he wasn't referred to them on the basis of sensory need they may not have assessed that at all. And if he's usually compliant, the sensory stuff might not have hit their radar. It's the kids who attack other children for getting in their personal space, or have a meltdown because the lights are flickering who have obvious sensory need. The nice thing about the questionnaire, is when it works (it doesn't always, alas, but when it does) it should flag up sensory issues even for kids like A who aren't giving anyone grief about it.

There is a school 10 mins walk from here which has 'outstanding SEN provision' and it says that the children with SEN make outstanding progress etc etc. They have a separate classroom for SEN and a sensory room. Our printer at work has an autistic son and he goes there and he really really rates it.

Unfortunately (in my opinion!!) they also have an Outstanding Rating from Ofsted and various national awards so every parent in the county is trying to get in there - ARRRGGGHHHHHH.

I'm going to make an appointment there though and ask to meet the SENCO etc

The thing to remember - if he gets a Statement, he jumps the queues.

[redhed]

Would Spud get a place (or a potential place) because his brother did?

Because otherwise HOW is it going to work - Alex could potentially be at school 10 minutes walk away (and you can only walk -it's in a pedestrianised bit of the town centre) and his 4 year old brother could be at a school in the middle of nowhere 10 miles away..... I know I'm racing away mentally but I feel really aware that all the time Spud is kind of over-looked and his needs glossed over - it makes me cry actually. Raw nerve.

Yup. That is a nerve I know and love.

He should get a place, yes. Admissions criteria for the school should be online. Pretty much all schools the top criteria are kids in care, LA placements, sibs and then <other stuff> which in Church schools means Vicar's pets then location and other schools means just location. So he would only have an issue if it was a freak year and oversubscribed with sibs, then they would start taking sibs in location order. School should be able to give you an informal view of how likely that is.

It's a funny one, because usually it's the other way round: usually the SN sib goes to a special school which is miles away (because they are so few and far between) and the NT sib goes to a local school and the council arrange Transport for the SN sib and you sort out the NT sib. Not entirely sure what happens in the event it is the other way round. The advantage of Transport is that as he gets older there may be ASD-specific after-school care available and Transport often drop there for free. So there is (oddly) some down-side to the local school though it sounds to me like it's trivial in the grand scheme of things.

ETA - have a look on your council website for their home-to-school transport policy. Ours says any child who has (not through choice) to go to a school more than 3 miles away qualifies for free transport. So Spud would be on the school bus. It's the logistics around that which are tricky and tbh it probably varies school by school let alone authority by authority.

[Franny]

You can have an IEP without a statement, though I think it depends on how the school does things. DD had one in her infant school for her schoolwork (she wasn't meeting the targets expected for her age), for her concentration, inability to understand 2-step instructions and for being unhappy coming to school (she was basically clinging to me crying every morning because she didn't like her teacher).

The infant school reviewed this on a 3-monthly basis and set new targets. If these targets were not met, which, in our case, were not, they called in outside help - an Educational Psychologist. This is to find alternative strategies to deal with certain aspects of behaviour other than the usual time-outs & sticker charts or learning techniques to suit your child's particular way of learning (in our case, visually).

Our junior school has been a different kettle of fish. They don't do IEPs for those not on School Action Plus (i.e. extra help with an Educational Psychologist), which DD is no longer on but they do support pupils in areas of weakness - in DD's case, handwriting, spelling, listening and are satisfied with her progress. She goes to a couple of extra groups and is in smaller classes. She is certainly happier, which is my main concern, actually, and I think that has a knock on affect on their ability to learn. With last year's teacher, DD fell so far behind and the EP kept saying it could be anxiety and I think she was right about that.

I agree that there is far too much emphasis on OFSTED. I think that works for those who have average children who are quite bright but for those who struggle for whatever reason (be it SEN or just plain lack of intelligence), that way of measuring things is irrelevant.

[WoollyNewty]

Thanks Red - the think is Spud is already in Reception -he started in September- youngest child in the entire school actually!! 4 years 2 weeks. So it would be a mid-year transfer.

I know the school is full so if Alex got in I'm just hoping that would somehow magic him past all the other children and he'd be first on the list

I tried to get Alex in there when we moved here but it was too late - if I'd moved earlier he'd have been there anyway - argh the frustration!!!

[Blonde Girl]

So glad that you have someone so supportive on your side hun. Good luck with it all, is ex-DH being supportive too? x

This, exactly this.

p.s Red when you say moving him seems to hard I basically burst into tears. It will have massive impacts on my life - I might have to give a lot of stuff up. And I don't mean little things. You know when you try and balance everything up and take the long view, how do you know? That's a rhetorical question by the way....

Oh my lovely, once again I wish you still lived here so I could try and help

Alex is so vey, incredibly lucky to have you on his side, you must never forget that

[Katoid]

I don't have any words of wisdom Wooly but I feel so relieved for you that you finally have someone fighting with you and I wanted to say big hugsyou are being so strong. And please create merry hell with your existing school governors, they NEED to know so that the appalling Sen provision can be addressed xx

[Abbie]

I don't really have any advice, but can give you lots of sympathy

Have you got a local Parentline Plus or Children's Legal Centre?We're in the middle of statementing/SEN/OT applications at the moment and I had a complete meltdown with them today after hearing our LEA had refused our application for an assessment but wouldn't accept a private assessment either (DD2's already been informally assessed by their Ed Psych and is failing badly at school) and they were incredibly helpful, knew all the legal jargon that was completely baffling me and what next steps to take.

I'm constantly amazed by our council's attitude to SEN, they couldn't give a shiny shite,, they really don't care.

[WoollyNewty]

Thanks Abbie (and everyone else) - it's like a huge tangled web isn't it. I need to break it all down and start at the beginning. I felt fine earlier and now it's 'that' time of day and I've just had enough. That is appalling Abbie - I really hope they help you get what you need for her xxx

[DillyDally]

I'm just whizzing by, and wanted to say I'm glad your family support worker is so ... supportive DS1 had one - she was a hatchet-faced cow who hated him - I had to ask the school not to let her go near him