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Help ds gets in school and what to expect from a statement?

(26 Posts)
claw4 Fri 09-Nov-12 22:47:58

Ds gets

Motor skills group x 2 week 30 minutes
Anxiety management 1:1 with TA 1 x week 30 minutes
Self esteem group x 2 week 30 minutes

SALT recommends things such as

high level of 1:1 in the classroom to address language processing, receptive and expressive language difficulties

Programme to be written by SALT and delivered by SALT observed by TA

Social skills programme to be written by SALT

EP recommends things such as

Personal work station

1:1 in core subjects

Laptop and permission to use a laptop in forthcoming exams

OT recommends

Movement breaks
Fiddle toy
Multi sensory base to develop handwriting skills
IT support and early keyboard practise

OT sessions by sensory trained OT, TA to be present at all sessions

OT to observe ds in the classroom every 2 weeks and provide advice to teaching staff with regard to his sensory processing needs

A programme for daily integration of movement breaks and sensory management techniques should be implemented in classroom

Staff should be trained by OT to implement a sensory processing diet

School say ds doesnt need any of this, is this the kind of help that a statement brings?

mymatemax Fri 09-Nov-12 23:12:09

Although there looks to be alot of words under the OT recommendations, once the strategies are embedded they should be able to be used to help your ds remain included within the classroom to access the curriculum.

What part is this in?
Total hours support must be quantified, who is to deliver what must be clearly defined etc
Personally i try to resist ds2 being removed from the class for endless group sessions & strategies etc (apart from more literacy & numeracy)

AgnesDiPesto Fri 09-Nov-12 23:15:23

Just shows how children / approaches are so different. DS does not do any of this - SALT is on the statement but they do not actually do anything. And of course he had FT 1:1 ABA.
He does not have separate workstation etc - does not need it as his sensory issues are minor, does not do or need OT.
ABA covers social skills and language.
I would be suggesting these programmes need to be delivered by much more expert and experienced staff - even if school was doing them it would not be doing them well.
Self esteem and anxiety management sessions need to be taken off school and go to psych / behaviour support, someone actually qualified in counselling / mental health etc
Hopefully the private EP and CAMHS can suggest some extra things?
Perhaps more emphasis on life skills, problem solving, independence not just academic - very much taking what is learnt outside the classroom to real life

I think I might be worth arguing for a holistic approach in a small, friendly school with asd expertise where perhaps psych support, OT, SALT etc is readily available on site - not delivered piecemeal by loads of different services - a school where there will be stability for social and emotional needs - so indep school for HFA etc if there is one.

Don't know what others think but maybe rather than asking for a list of SALT, OT etc delivered by many different places and people, say that really what your DS needs is a school where everything is available and co-ordinated in one place and he feels safe and secure.Your DS and you deserve a school which just makes it all happen on site in a seamless way.

Also argue a need to make up lost ground academically / socially etc due to disastrous school experience

Have you a school in mind? Am thinking an on site psych would be a good selling point for CAMHS to back you on indep SS.

mymatemax Fri 09-Nov-12 23:35:55

It depends entirely on your ds's needs. In many ways I have the opposite view to Agnes.
I want the statement to support ds2 in the classroom with a TA supporting him to join in with the lessons & curriculum of the day.
So i am very keen that the TA & his teacher are the ones who know ds2 but learn the strategies (sensory, salt, OT, psych) and use them when adapting the curriculum to allow him to access it.

Physio programme, sensory programme, small amount of salt we do at home on a daily basis & leave school for school stuff.

claw4 Fri 09-Nov-12 23:49:21

mymate sorry i should have made it clearer, ds doesnt have a statement, i have applied for SA, school are saying ds doesnt need any of the help recommended by experts and opposing my request.

Agnes school i have in mind in exactly what you describe, MS ind, with psych, OT and SALT on site, much smaller class size, so i shouldnt think ds would need 1:1 in the classroom, personal work station etc.

Also very impressed with their eating plans, they have a canteen which caters for individual children and would be able to incorporate ds's OT eating plan too, which i didnt mention above. He hasnt been able to eat in school for over a year now.

mymatemax Fri 09-Nov-12 23:53:56

Claw - Has he made progress, how have they been measuring it, does he have targets/iep, have they been met?
Yes I know much of the time IEP's & targets are crap but it is quicker to play the game for a couple of terms to demonstrate within their process that he needs a SA & additional support provided by a statement.
Has an LEA EP assessed him at any time in the past? If so request another Ed psych assessment using the previous as a baseline.
If they havent been using clear measurable targets using the previous EP assessment is the way forward.

claw4 Sat 10-Nov-12 00:00:34

mymate quick summary would be ds is currently out of school due to anxiety/self harming. School make up IEP's as they go along. For example, i ask for copies of IEP's for 6 months, they avoid giving me copies because they dont exist, then make up there and then on the spot when the LA asks for copies.

I have requested another LEA EP assessment ie SA, school and LA are refusing.

AgnesDiPesto Sat 10-Nov-12 09:43:59

mymate I would agree Claw's DS could and should have managed in mainstream if it had been done properly 2-3 years ago, but 2 mainstream school have failed him so he now needs something different if he is to get back into education

Claw I know of a recent tribunal where won indep SS on basis of this 'holistic' argument - thats why I think its worth pushing - as a hotpotch of services is much more likely to fail / him fall between gaps. I think having a 'one stop shop' is a good argument given mental health aspect. If CAMHS have any sense they will back you as it will be less work for them if there is on site psych support.

claw4 Sat 10-Nov-12 09:50:53

Agnes, CAMHS stated in their A&E report that they also feel the self harming could be a sensory thing. She was saying when children with ASD self harm, it is usually more complex than a 'normal' child, they tend to find it is a mixture of sensory/anxiety, so another line i could follow up.

CAMHS had also stated previously that ds would need continued help with finding different ways to express himself and targetted work on his social interaction and understanding. SALT input?

wasuup3000 Sat 10-Nov-12 10:22:12

After what he has been through it is exceptionally important that the next placement is successful, it must be one in which he feels safe and one that he can achieve in.

claw4 Sat 10-Nov-12 10:40:56

Wassup, i totally agree, i cannot keep putting him in and out of school, if this placement doesnt work, i feel i will have no choice but to home school.

AgnesDiPesto Sat 10-Nov-12 11:53:10

DS has done minor self harm e.g. he sucks his thumb until the skin breaks and then repetitively picks at the skin. I think of it as a repetitive behaviour / stim for DS. Also he lacks the understanding that if I keep picking this it will hurt - that bit just escapes him.
We have used redirection and positive ABA rewards for keeping hands still etc
If he did not have ABA 1:1 and was allowed to suck his thumb at school within a week or so we would be back to having a serious problem.
It relies on everyone all day being on top of it and limiting the time he does it.
Sometimes school says our expectations for DS eg sitting nicely, keeping hands still far exceed their expectations for the other children, or will say 'lots of children suck their thumbs at that age' - they just don't understand that its easier for DS to have clearly enforced rules of how to sit etc and without these he would push behaviours beyond what is normal into self harm. As they have never seen it get to this point (as since we have had ABA it has been controlled) they don't realise that DS can't be trusted to stop a behaviour at a typical boundary point, he will just keep going.
I haven't noticed him doing it out of anxiety, more sensory or just boredom / not understanding the consequences.
I know an older child with similar self harm / stims at DS age. He has discovered table tennis and plays competitively. His Mum says his other stims / self harm have reduced. In effect he has replaced it with a new stim - sport - which just happens to be socially acceptable.
I think for DS it is very much directing him into other activities which occupy him - as he struggles to occupy himself.

Whatever the cause of the self harm - your DS is still expressing very negative thoughts about death etc so even if he did not have the self harm, or that is unconnected, there are still serious problems with anxiety, self esteem etc which need specialist support and an understanding school.

Its so frustrating as I can see a tribunal would find it quite easy to agree this placement for your DS given all he has been through - but you still have so many potential hurdles in your path before that point.

Am keeping my fingers crossed CAMHS help - but I guess we can't expect a hard hitting report supporting a new placement on the first appointment!

Hang in there, you are doing brilliantly.

KeepOnKeepingOn1 Sat 10-Nov-12 12:35:37

Motor skills group x 2 week 30 minutes
Anxiety management 1:1 with TA 1 x week 30 minutes
Self esteem group x 2 week 30 minutes

This is better than what DS has on his final statement! His self-esteem provision is wishy washy being involved in setting targets and reviewing, a buddy system, close liason between home and school crap that has been on his IEP for years. They have completely ignored the anxiety and motor skills. I have been thinking about why DS's provision is so crap but from what I can see the sneaky bastard head at his primary reduced the amount of support on the IEP - he had never got around to filling in that bit of the form when we had a review and we never saw the final complete copy (and so never signed any IEP). Its a bit like putting up prices before a sale (at the original price). Next time (DS2) I will work on pushing up the school provision to the max before applying for a statement and watching that it stays that way.

What you've listed cover 2.5 hours - does he have any more provision?

mymatemax Sat 10-Nov-12 15:42:35

Sorry claw, didnt realise the history. What's NHS provision like where you are. We R very fortunate to be able to access good profs via the NHS & there is no conflict of interest when reports issued to lea. We use lea therapists very little. Have you explored NHS route?

claw4 Sat 10-Nov-12 22:30:50

Agnes when ds is at home and doesnt have school, his self harm reduces greatly or stops completely, i give him other things to do with his hands and allow him time to line things up, time alone to shake his hands and head, not ideal, but it breaks the 'habit'. I have noticed that ds tends to scratch with frustration, so i try to keep frustration to a minimum. The minute he goes to school, the scratching starts again. I do believe its partly sensory, partly anxiety and partly a repetitive behaviour to deal with frustration or any other feeling.

I can remember the day it started in 2009, it was very much a repetitive behaviour or stim or whatever you want to call it, he was drawing his finger across his chin every few seconds, which caused friction burns on his finger and chin, blisters etc he was also behaving very agitated, lots of fidgeting and rocking back and forth. In fact you saw him, with the cuts on his face and finger.

Ds is very aware of people looking at him when he stims and he only stims when no one is looking, although he gets vocal tics from time to time which he cannot control.

So i think partly sensory, partly anxiety and partly stim

claw4 Sat 10-Nov-12 22:42:20

Keepingon, no that is it, but none of that provision is targetted or measurable. He doesnt even have a TA in the class room.

Motor skills group is run by a TA, who has had not training. The majority of ds's issues are sensory, not motor. Not included in an IEP, no targets etc.

Anxiety management is again with a TA and he plays in a sand tray, giving him the 'opportunity' to talk if he wants. Not included in an IEP, no targets etc.

Self esteem group, is social skills group, which has just literally been recently renamed for the benefit of suppling 'evidence' to the LA and Tribunal.

When he started at this school they gave him 20 hours of 1:1 to help him manage his anxiety. They implemented a feeding plan. He had 1:1 SALT delivered by a TA a few times a week. All now removed.

I have never been asked to sign an IEP, in fact no one signs or dates his IEP, i have never been given a copy of an IEP. I get copies of IEP's in the LA bundle.

claw4 Sat 10-Nov-12 22:57:42

Mymate, OT is not available on NHS. NHS SALT gave school a DIY sheet to work on sem links and that was it.

School have quite a few resources available to them ASD Outreach, Motor skills outreach, visual impairment outreach, SALT outreach who are like SALT 'assistants'. But they have never used it for ds, as 'ds doesnt need this help'

I self referred ds to the visual impairment team, who concluded ds 'would need to sit next to the teachers laptop, so he can see whats written on the board'

School did call on the SALT outreach team, but instead of asking them to work on the difficulties identified by SALT's, they asked the class teacher to fill out a questinaire, all of which indicated 'no difficulties' and they concluded, he didnt need any help!

I self referred to ASD outreach and she concluded that ds struggled with language, communication, interaction, rigid thinking, seperating fantasy from reality and that he could not work as part of a small group. He could not change a library book without adult assistance, he came close to tears at fruit time and needed her to prompt him to say he did not want fruit and that she observed him hiding his PE kit and telling his teacher he left it at home. He could not see the whiteboard. She said she would refer onto visual impairment team, SALT and motor skills teams.

She never did, i referred to VI team.

When i approached the ASD Outreach team again about ds's self harm and applied for SA, school reported me to child protection as 'my constant focus on his difficulties was the cause of his distress'

mymatemax Sat 10-Nov-12 23:20:16

Thats bollocks, sounds extreme but can you move?

It may save years of stress & an awful lot of money in private assessments & therapy.

claw4 Sat 10-Nov-12 23:30:03

Mymate, i have already moved boroughs, this is my second borough, as well as school.

My problem is ds is passive, polite and not a problem to anyone but himself. Which is why he needs, specialist input, not some SENCO who has done a few courses and thinks she knows better than experts.

According to school ds 'is happy, doesnt suffer with anxiety or self harm' exactly what his last school said.

Despite overwhelming evidence like CAMHS saying he suffers with high anxiety and does self harm and in writing numerous times. Its amazing how much school is believed.

School cannot grasp or understand ds's difficulties, so therefore blame me.

mymatemax Sun 11-Nov-12 17:01:38

claw, My ds2 is exactly the same, not at all disruptive to the teacher or class. It can be difficult to amke them look at the childs needs rather than the teachers needs.
I remember when ds2 was at nursery someone told me that statements are all too often issued based on the needs of the school rather than the needs of the child. How true.
Each new TA has said about ds2 "you would never know he's autistic" like he should come with a bloody flashing light above his head. They've obviously read the text books that say autism=disruptive behaviour.
Thankfully we have always had wonderful NHS profs who ahve known ds2 for yrs.
my ds2 is so passive at 10yrs he still has no independant thought process, his teacher could tell him to sit on a chair & he would sit there until told to move. The classroom could burn down around him, he's still sit there. Distraught, anxious but hed sit there!

claw4 Sun 11-Nov-12 17:22:45

Sounds very similar to ds, at parents evening his teacher told him to 'take a seat outside for a minute, so she could speak to mum' he proceeded to pick up a chair and take it outside and the teacher sat there and told me she sees no signs of ds taking things literally!

alison222 Mon 12-Nov-12 13:23:34

claw I was told that OT is normally NHS. We were referred to OT by GP. Ds was asssessed and had a small no of 1:1 sessions outside of school. OT review every year continues. We also have OT in DS's statement and the OT was very clear that this additional amout of OT (in part 3 of statement) needs additional commissioning.
The Other things seem perfectly appropriate to be in a statement too.
The amount of 1:1 time would need to be quantified otherwise it will not be provided, not "access to" or "should provide" or anything like this.

As an aside there was a recent threadin SN's about IEP's and school are supposed to, according to the SENCOP consult parents when they produce them so that you would definitely know they existed if they did this. I can't find it at the moment, but you might have better luck

claw4 Mon 12-Nov-12 21:58:07

The problem with sensory trained OT's is they are like gold dust, NHS in this borough is over worked and under staffed. They declined the referral 'as they can only take on the most severe cases ie children who could not walk or eat'

So the only way ds could get OT help would be with the funding of a statement and private OT. Even though school made the referral to OT, they are now saying he doesnt need this help. They contridict themselves, he needs it enough to make a referral, but then when it involves a statement, all of a sudden he doesnt need it, so why make a referral, if he doesnt need it!!

I have given up with this school, i have quoted the SEN COP and asked them to work in partnership with me, they ignore me.

Im not worried about trying to work with this school anymore, i just want ds to get his statement now.

mymatemax Mon 12-Nov-12 22:09:39

Claw sadky that is so true, when ds2 was first assessed by the specialist ASD sensory OT I was told by the paed that our NHS was one of only two in the country offering specialist sensory OT for school age children on the NHS.

What a sad statistic, especially given the huge positive effect the therapy can have, very little input can have long lasting effects.

alison222 Mon 12-Nov-12 22:13:49

Ok then to answer that direct question I believe that if you can get Sensory OT in part 3 of the statement then the LEA have to provide it one way or another - even if it means a private OT.
However, to get OT in part 3 of a statement is unusual - and I'll let you know about the sensory stuff as I am currently trying to sort that one out with school and the LEA as it is NOT being provided.

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