i feel like crying

[claw3]

just had a disastrous feeding clinic appointment.

OT assessed ds at home and was very much on side.

She then assessed ds at school and is now very much not on side.

I have been given the old 'children often display different behaviour at home' line, which is code for we dont believe you.

School have reported that ds is doing fine and has no difficulties in school and that i harass the SENCO as i am an over anxious mother who exaggerates ds's difficulties (obviously not said in so many words, im exaggerating obviously!)

She observed him at lunchtime and saw him eat ALL of his lunch. A quarter of chocolate spread sandwich, big bloody deal.

School have reported that give ds all kinds of wonderful help. This is not the case, they give him zero help. When i pointed this out, feeding clinic replied 'they dont get involved with schools disputes and i need to take this up with the school'

I reply 'well dont tell me he has no difficulties in school then'

A bit later she says again 'ds is coping fine in school with the help the school have put in place'

I show her a copy of the teachers report which conflicts with ds doing fine in school. She replies again 'we dont get involved in school disputes'

What is the point of talking to these people, if they dont even believe what you are saying.

I feel like telling them all to take a run and jump.

Whats the point of ds being given a label, if no one believes a word you bloody well say

I give up!

Off to CAMHS appointment now, rant over!

Whatever schools say is true .

When they say they are giving support it's always true, even when you can prove they aren't.

Other professionals will always believe schools' accounts because evidently they're more reliable than a raving nutter of a parent who can't possibly be objective when talking about their own child.

If it isn't on a letterhead, it didn't happen. Years of concerned discussion about your child mean nothing because it wasn't written down.

You end up with every professional opinion being a variation of what school said, because that's the only information they act on and what they use as a basis for their own reports. It's a waste of time talking to a lot of people.

Very few professionals have any clout when it comes to getting anything done, hence they 'don't get involved with school disputes'. They can advise if they see fit but can't enforce.

Based on my own hideous experience, natch, but frighteningly commonplace nonetheless.

Oh claw, I'm sorry.

Got to run as must tidy up before visitors arrive, but popping on to sympathise and will return.

Oh god it's all just so bloody ridiculous.

Thanks guys, im so and frustrated.

Obviously have school have told the OT that ds's doesnt eat because all i give him is a quarter of chocolate spread for his lunch.

He used to have a full packed lunch, but because he all he would eat was a quarter of chocolate spread sandwich, he was made to sit at the side of the lunch hall, while all the lunch tables were cleared away.

When i told OT this prior to her visit, she was 'Oh dear, they shouldnt do that'. After visit she is 'school dont do it' because she observed ds leave the rest of his lunch (the same lunch that was ALL eaten) and he was allowed to go out to play. Apparently ds commented 'my mum knows that i dont eat that' (i do know that he doesnt eat it, thats why i usually only put in a quarter of sandwich, but OT asked that i give him a full lunch). I was then asked why i put things in his lunch that he doesnt eat!

School have kindly offered to give ds a school dinner free of charge for a day we will make him eat, no doubt! Although they will not agree for him to try to eat a school lunch once a week, as i suggested.

What is the fucking point of letting him try a school lunch for ONE day. Other than lets see if mum is telling the truth here.

Wankers the lot of them.

I have agreed, so they can experience the full phobia. There is no way ds will even hold the tray to put his lunch on, let alone eat it.

Why the bloody hell should i have to put my child through this, just to prove a point though.

I'm sorry claw, the school sound just absurd. Why won't they agree for your DS to try and eat a school lunch once a week? If he has a statement, is there any way something about this could go into it, perhaps at the next review?
Hope the CAHMS appt went better than this?

sc13 because children have to be school dinners or pack lunch for a full term. They are not allowed to change mid term. They are not allowed to pick and choose which days they have school dinners. Its school policy.

They dont care if you have a disability, it is their way or no way. They will force that square peg into a round hole or die trying im afraid!

Yes CAMHS dont listen to a word i say, but on the plus side they dont listen to school either. They have done their own assessment of ds for 10 weeks and made up their own minds. Ds now goes for 1:1 therapy once a week for year for his 'anxieties' (CAMHS offer a years worth of therapy to all children who dont need it, dont you know!)

She gave me a brilliant report today based on her observations of ds during the 10 week assessment and states 'ds was eager to engage with the therapist,it is clear that ds finds adults helpful and will go to them when he needs to. This is probably due to the safe and caring relationship he has with his mother and family'

he has been given communication cards in school, because he wont ask for help in school, i wonder why!

Oh and apparently ds is given help every PE day.

I asked OT why adults are helping ds to put his clothes on inside and out, back to front and his shoes on the wrong feet? She looked down at her notes and didnt reply.

Grr do i follow up this appointment in writing, as OT is going to prepare a report based on 'ds is doing fine in school, but mum has real difficulties with him at home'. Therefore it is a home problem, not a school one.

or leave it and wait for report and hope to be pleasantly surprised that the report is balanced.

For example OT stated 'they often see a difference between school and home behaviour, because school is very structured'

Ds acts exactly the same way in school, school just cant identify his difficulties (well they do, they are listed as concerns in an his IEP, he just doesnt receive any help for them)

I took copies of ds's IEP where difficulties are listed. They werent interested in seeing them as 'they dont get involved with school disputes'

How can OT make recommendations if school are saying he doesnt have any difficulties?

Whats the point of the report?

Sorry rambling now and thinking out loud

Claw

sorry the appointment was a bit grim. I think the problem isn't even that school is rubbish, but that school are at best very much in denial, and at worst barefaced lying, which causes knockon problems with the professionals. I think you said you were on the waiting list for another school for him, I agree with Sancti that this school sounds doomed as they just won't work with you at all.

Electra, i thought the feeding clinic would be independent, well they are. They have just chosen to believe team school, instead of team Claw, im afraid.

Unfortunately they have also told OT, that i am an over anxious mother. If i complain about the appointment, it will make school look right.

I suppose i can use school's failure to report the exact same difficulties they have listed in their IEP to outside agencies to my advantage. I am appealing the LA's refusal to access for a SA and my whole point is that school are unable to identify or understand or put adequate help in place for ds.

I have 2 SALT reports
I have 1 bibic report
I have 1 private EP report
I have 1 CAMHS report

all of which support what i am saying.

Santi, the school i have ds's name down at, is the nearest school to me. He is and has been 4th of the waiting list for some time. He will not take priority on the waiting list, unless he gets a statement. Siblings can knock him down the list at the moment.

I also fear if he goes to another school, without a statement. The next school will be told no difficulties, over anxious mother and im back to square one. If im honest i cant see any school handing out help when they have been told by previous school, no difficulties.

In my case 'acting better at school because of more structure' is code for 'you are a bad parent who has no rules and mollycoddles'

Ds has exactly the same difficulties at home and at school. If anything his problems are worse at school, not home.

For example he eats more at home, he doesnt eat at school. He soils every time he needs to go whether this is at home or school, the only difference is he will ask me for help, he wont in school etc, etc.

I dread to think how school would actually handle bad behaviour from ds, they cant even handle good behaviour!

Total, im torn between pointing these inaccuracies out in writing, as they didnt seem to take too much notice of what i was saying.

For example 'the behaviour being different at school and home'(as if he only acts this way at home) I dont think that is correct, as i said above his behaviour is worse at school than home.

What would you do?

What a hard situation to be in, you must feel very trapped. However, another school which understands what it is seeing might well not take the word of the old school. It is scary to change, but we did and the head at the new school we chose took one look at our DS and saw 'traits' she knew how to recognise. The change prompted a breakdown in some coping strategies for our DS which has been/is being upsetting but was going to happen anyway at some point and meant things came to a head. But we have also had active support in going for SA (decision due this weekend - gulp) and when DS has actually managed to attend things are handled well.
Can't advise what to do, but sounds like they are a brick wall too thick to dent. Hope you find some resolution soon - and peace for you, it is too much to have to battle on and on.

Claw, I really sympathise as we had this from the stupid CAMHS woman who went in and was 'charmed' (her words ) by DS's Mrs Fluffy teacher.

I did write because I felt she missed the context of the observation for diagnostic purposes....i.e. that DS was getting significant support to keep him looking as happy as she felt he was.

What I have found though is that there is no way professionals are going to act as judge and jury on the school. The most that they will or can do is acknowledge a problem and say it would help if school do this or that.It is then left for you or school to sort out the problem between you.

Of course the difficulty then is that if school are saying these problems don't exist, then you won't even get this much from a professional as you cannot even get them to make a decision on whether there is a problem.

If a school is prepared to deny that a child has problems in school because it wants to cover its own arse or can't be bothered with the extra work, I don't see how much further you can go. The willingness to help a child is key because without it, even with a statement, you'll always be chasing them.

It is a conclusion I'm reaching with DS's school. Yes, he might be happy in class, yes they might even be doing some of the things they should be doing (after lots of persuasion) and yes things have improved. But do I see a genuine desire to ensure his needs are met? No. Do I suspect they would rather he just move on? Yes. No statement in the world is helping with that and frankly, life is too short.

Claw...I remember reading this a while back - Not that I read the Daily Hate as a matter of routine - www.dailymail.co.uk/health/article-1167554/Autism-specialist-changed-diagnosis-newsreader-Ale x-Thomsons-son-pressure-schools-chiefs.html

I just thought this might provide a bit of context. It's not about you or your child. It's about money and who is funding support.

I could see at our ADI yesterday that lots of 'what fantastic work you're doing and how well everything is going' meant 'you can get lost if you think anyone is going to offer you anything as a result of this'

claw - starlight and debs are the tactical geniuses of the board (and of course our teen mums, Wet and Goblin!). So I would defer to their view rather than mine - but certainly my instinct would be yes, to write a brief polite letter (maybe attaching copy IEP), but not to expect anything from it other than another document to add to an ultimate tribunal file...

debs - NHS SALT (otherwise quite good) wouldn't tell school to implement a home/school book, said they would take it more seriously from me, and I should provide the notebook

Total, I say missus, too kind

I don't disagree about writing if she is going to do a report or her opnion is going to be fed in to SA or diagnostic assessment. Maybe just in a very clinical way e.g., I wondered if it might help if I supplied the factual background to aid with your report writing. She might just use that if it is what is indisputable between the parties e.g. IEPs etc

Agreed Star but keep it factual doncha think?

I think that as they think we're all a bunch of old witches in any event you may as well write what you like!