Just been emailed OT report

[claw3]

Ive just received my long awaited OT report. I have been waiting since December 2008 for it.

In order to comply this report, she went into school once and observed him during playtime and lunchtime recently, after not seeing him since December 2008 (and me making an official complaint to the NHS about her)

Now i have been 'negotiating' with school to put some help into place for ds and some parts of her report are well, damning and i would like your advice.

For example since starting school in January 2009 ds has never eaten any of his packed lunch or if he does he will eat literally one mouthful of his sandwich. OT report states based on her observation 'ds is a full and willing participant and has been seen to eat his dinner within his designated table'

She states she has attended 'multi disciplinary meetingS at school. She attended ONE meeting and it was not 'multi' the only outside agency there was her. She attended this meeting as ds had been extremely distressed and confused in school and was claiming that lots of children were 'hitting' him and they were not (she hasnt mentioned this) she covers this by saying 'playtime has in the past caused ds some difficulties in social interactions. Then goes on to say 'ds was observed playing happily with other children'.

Now for the really damning bit 'Particularly work has been undertaken in conjunction with his school around the school day and particularly toileting and break times. The school have worked very hard with ds to ensure that he is fully supported and all strategies suggested are being undertaken.

For example

1. A concrete set of pictures on a key ring such as a ?toilet- for I need to go?.
2. I need assistance as I?ve soiled self.
3. I need time out from the playgrounds etc.

The school have basically handed ds 3 cards, which he doesnt use. He gets no other support or help other than that.

Ds has been discharged from their service, as i have moved borough and they HAD to comply a report so that he could be discharged.

I have been chasing OT so that ds can be transferred. I did question whether any report would be relevant after this time and whether he would need to be re-assessed before he could transfer to new Borough and was told by Head of OT, that report would be relevant as OT attended meeting in October 2009 and then subsequently observed ds in playground/lunch hall a few days later, so was up to date.

So if report has been written today, it should contain up to date info on ds then?

Should also add complaining will not hold up ds's transfer as the new borough dont have a service for him to be transferred to (another official complaint to get the service)

Claw I'm sorry. I had a rubbish day with professionals yesterday too. I have reached the point now where if I had the money I would not deal with any public service at all, they have caused us lots of stress whilst simultaneously not achieving anything for our son at all. You could do a request for her records which would prove she had only been to one meeting etc. Star is right you should write back and disagree and say that her description does not reflect your child at all. You could I suppose say you have no confidence in her and ask for a second opinion but then you'd be sat around for even longer. It is quite serious really as although professionals can spin their opinions to say whatever they want their observations should be accurate. They should not be recording observations that are false.

I'd be tempted to make a general records request to the hospital and just list all the depts DS has been seen in so its not obvious you are after the OT ones and see what they say. ie has she actually made those observations at the time.

Claw, you poor thing. How shocking to wait so long for this crap.

Can you (you might have done this before) write to the Chief Exec of the hospital to complain about the length of time the report has taken? Write to the PCT too so they know how their money is being spent

From a legal point of view, there are two points about the value of evidence like this:

1. As grumpy says, the important bit of her evidence is that based on her observations, so you could do with obtaining a note of those observations. She is entitled to give evidence within her own direct experience

1. She is also entitled to give evidence within her own sphere of expertise - i.e. her opinion counts if it is her given on mattters relevant to occupational therapy. I do not see the relevance of her comments about his social interactions on one particular day as being of any particular weight

So, don't worry about:

1.Hearsay (i.e. what she reports she has heard from the school about what they are doing - she has no personal knowledge of whether this is donein her absence)

1. Her opinion on matters that have no relevance to her expertise

1. Observations can be challenged if they have no contemporaneous notes to support them - e.g. a police officer in evidence always refers to his/her notebook to support the comments made in their statement

Now, this is a very legalistic approach and I think even Tribunals do not adhere to rules of evidence as stringently as courts BUT it might reassure you to see this is only one report and it is challengable

Bear these points in mind and do a list:

1. Challengeable evidence
2. Evidence of needs identified
3. Recommendations for support

Grumpy, i had a rubbish day yesterday, first CAMHS appointment, despite me giving them copies of ALL reports, they hadnt read any of them.

So the appointment was along the lines of 'how do dp and i react to stress and oh with all the problems ds has, you cant get much time together' ARGH! No further appointment has been made as they feel enough experts are already involved and that we already have strategies in place to deal with ds behaviour. They are going to read reports and get back to me!

If it wasnt for the fact that i see ds's packed lunch and how much he has eaten, i see that he returns home with soiled trousers. He does exactly the same thing at home as well, i would think i was going mad.

She probably did see him put a sandwich to his mouth and take a bite, he most definitely has NEVER taken more than one bite out of it though. She also told me that she had to observe from a distance, how would she know whether he was 'happy' he laughs when children are swinging him around by his coat, throwing him to the floor in anger.

Sorry Grumpy im fuming at the moment, im sorry you had a rubbish day too.

I feel like giving up and telling them all to f* off, ive been dragging ds to all these appointments, assessments for years and for what!

Hi Debs, thanks some practical tips for me, im still emotional (angry) and its hard to think logical when steam is coming out of your ears!

I did complain about the length of time the report has taken in my official complaint to NHS in August 2009, hence the school visit from OT and crap report. Who are the PCT?

and i have scribbled down your comments and i will set about asking for amendments (once i am calmer!)

Starlight is right.

Get it out there. Write. Thank them for seeing you but say you are now confused about what is going on.

It is very emotional when you get reports on your children. But someone gave me some good advice - be methodical, be polite, ask questions, but put your foot down and don't be worried about upsetting people. This is not personal, this is you doing your best for your child.

All is becoming clear, just had a phone call from new Paed about my complaint to new borough about no service being available. He is saying that he has received a copy of OT report and thinks it is a pile of poo too!

He says it is worthless and that they havent answered any of the questions in it, that he requested they answer. He asked them

1. How was ds when he was first referred to OT in October 2008.

1. What input they have given.

1. What progress he has made.

1. What are their recommendations.

He also told me i should not have made a complaint (like Head of OT in this borough advised me to do) and ds should not have been discharged from their service as they knew that new borough did not have a sensory OT. All they had to do was continue his OT and new borough funds it!!!!

So they are basically trying to say that ds doesnt have any problems to cover their neglectful arses by the look of it?

Great that you have got a good paediatrician in your corner!!

I wouldn't be surprised at all if that is what they are doing. I'm not sure why the complaint about bad service should not have been made.. That should not stop them doing their bloody job!!

Also had a phone call from school this morning from school receptionist, telling me the MD meeting has been arranged for 1st Feb.

What the school dont know is that CAMHS told me yesterday that they had a phone call from SENCO asking them to attend the meeting on 1st and they cant attend. They also told me that SENCO had told them that Paed, SALT, ASD Outreach and Ed Psy were not able to attend. So why are school still arranging a meeting for the 1st?

I have asked her who would be attending and she said that SENCO was still waiting to hear back from the people i had asked to attend!!

I have asked them to put in writing to me, who will be attending.

Im betting on OT, so they can all tell me what a wonderful job they are doing.

Debs i am loving the new Paed, i could kiss him. He is keeping me sane.

New Paed is saying that it is normal practise for one borough to fund another if they dont have the service and that the Head of OT is well aware of this. He is saying she has acted unprofessionally by discharging ds and trying to transfer him to a service when she knows that dont have it. She should have advised me about this, instead of telling me to complain.

I agreewith Starlight.

We had similar though not from OT (OT was a sweetie.Waste of space but a sweetie. It was when I gave her the Crelling catalogue that I relaised that I was chasing nothing very much!).

Ours was Ed Psych and it was all very similar tbh. Things observed that didn't happen, reality ignored,facts glossed over.

I did complain-I had to really, her fantasy report would have lost ds3 support and massively caused problems. She ahd witnessed apaprently ds3 doing things he can't now,3 years on- and I caoulnd nto find a single person to say they saw that happen (in a single roomed nursery...okaaaaay0

i think you do ahve to have it on fle how you see this, a PITA but a necessary one.

Peachy, as well as having an extremely limited diet, ds also has a food phobia, he is scared of any food which he doesnt eat, being near him or touching him (which OT did acknowledge in writing when she made a referral)so to state that 'ds is a full and willing participant' knowing that ds will be sitting there worrying about other peoples food being anywhere near him is B**.

He doesnt even eat/drink at home without constant prompting. He will move away if anyone sits next to him with food at home. He might be sitting there as this is what is expected of him, but he most certainly would be feeling anxious the whole time and this is reflected in his uneaten packed lunch every day.

God i dont know where to start with her report!

Oh and to top it all off ds tells me last that he doesnt like X, a girl who sits on his lunch table as she bosses him around telling him to eat his lunch,and tells him he cannot leave the lunch table until he has finished. (he doesnt even start, let alone finish so just sits there)

The school told me during the meeting with OT in October, they would assign him a lunch time 'buddy' girl X, to help him at lunch time, if he couldnt open his drink (as he had stopped drinking at lunch time too)

I have told ds not to worry and in his lunch today, i have put a 4th of a 1/4 of a sandwich, the mouthful he normally eats and a drink.

Thanks guys. I needed to calm down before I posted. SALT came with her manager in tow to our ABA session to discuss DS language progress and set programme / next targets. I set up meeting as we are stuck in mainstream for now until tribunal and SALT recommended nursery do 20 mins language per day following programme she would set. So I rang her up and asked her to set it. They turn up faces like thunder - odd as we have always got on with her. We run through our ABA language programmes. DS talks loads . Then outpouring of criticism and nit picking with what we are doing (bearing in mind DS referred to SALT last March and we have never had any programme from them). Eventually start criticising that we are asking LA to fund ABA and how unreasonable we are being asking for all this money, depriving other children etc etc. At which point I say I have not invited them to justify ABA or our statement request, I asked them here to discuss DS language. Turns out the SEN officer has rung them and put fear of god up them they will be dragged to tribunal and SALT is lying awake at night worrying about having to go to "court" and this is our fault for being unreasonable greedy parents. It sort of got resolved. We explained all the bullying and lies we had had to put up with and it was clear SEN officer now bullying SALT and I think they realised we were not nutcases and the provision we were getting was really really poor. But they were really aggressive and confrontational and didn't even have the decency to apologise for getting it wrong or being openly rude. But what really upset me was in the middle of ABA DS had said "I want Dad" but we had carried on with task and they said "isn't there any room for spontaneity in ABA" "that was a lovely moment couldn't you have let him go to Dad". So I said yes there is lots of fun and play, but in context of lots of people here to assess language etc and that DS uses cuddles as a way of getting out of ABA / anything difficult, we don't always let him stop, we wait until he has finished the task and then he gets to go for a hug etc. We explained how hard it would have been for DS to go back to his ABA if we let him stop whenever he wanted, he uses it as an avoidance technique gets really giddy and that we were trying to teach him skills that would enable him to learn and be able to go to m/s school. So the Manager turns to me and says if he wasn't autistic and was being really giddy and wanted a hug what would you do. ie implication I am crap parent who is rejecting my child's attention and not playing with him etc etc. And I know I shouldn't let it upset me but it does. Because if he didn't have autism of course I wouldn't be sitting him at a table teaching him to speak because I wouldn't bloody have to. It doesn't occur to them that the only reason he can say "I want Dad" is because he does ABA. They've never managed to teach him to say anything, but are quibbling over how to teach sentences. As our ABA bod says it because they do not know DS they do not know there are reasons why we teach him in the way we do. Its just so horrible horrible horrible. We have agreed all the reports (including SALT), its the LA who are going against the recommendations in the reports, not us. It makes me laugh, when we wanted their advice about education we were told SALTs aren't allowed to get involved but suddenly its ok to criticise our education choices. So they left and I end up in tears because I still don't have a language programme for DS, I don't know if they think his progress is good or not and I've had to justify how I parent my own child in my own home and now know our SEN officer is now going round slagging us off to everyone and spoiling the therapeutic relationship (what little there is) that DS has, when we have always had a good relationship with the NHS staff. And I am still waiting for one single publicly paid professional to actually help DS. So pretty s**t day. Ok rant over.

Grumpy hugs.All the people on the MA seem really against ABA tbh, I don't have opinions either way for us in that with 2 asd, one soummat else and ds4 looking increasingly asd also, there'sno way we could manage anything that intensive. But i think its a shame they (at least seem) so down on it- if it works for your kid, thats good enough for me. As it indeed should be.

Definitely wine /choc and pointless trash TV I think.

Claw DS1was really like that for ages,we'vegothime ating atm but what you are doing soundsexactly right. DS1 won't really drink still in the school day and I send him in with water to shut up any watching bods but in alltruth I dont bother asking him to drink it becuase I can get him to drink at home now twice a day which is a massive plus and I refuse toblow that.

A nibble of a sarnie is enough and far better than making food issues worse. I don't suppose there's any way he can eat separately? break down any sensory overloads that are happening that might reinforce the issue?

I dont know if it helps but it can get better. When I was about 16 I read soemwhere that peopledont like watching others eat,and that was the last timeI ateoutside the home for about 4 years. It didfade gradually though,and although it was a big issue for a while, these days my problems are more around trying to shift the fat, not make myself eat.
I do have other genuine phobiasa though and I know that stress levels massively magnify them;today I was relaxed and opened a parcelnot relaising there was a toy nakety (sorryc ant even type word,long wriggly reptile, scales) inside. I wasnt happy but it was OK: a day when I was more stressed and I would have screamed the house down before quite possibly passing out.