had ot report and not happy with it

[rainbow queen]

hi

 

ive just had the ot report and it is rubbish to say the least.

i cant understand why no one listens to me

on first appointment he would not co operate with her in the clinic,and they wrote,mum had many concerns about sons overall development[motor,self care,behavioural] and exprssed concerns about dyspraia /autism.

 

out come

 

son did not respond within clinical setting refusing to communicate or co operate with any activities-mother said this was fairly typical of his interaction at home.

 

from observations within class no ot difficulites were identified [motor,behavioural,self care social or academic]

 

there was no behaviour observed to indicate dyspraxia or autism nor were any concerns reported by his school--when in fact it was the school nurse who asked them to see him this is a complete joke

 

and i am now fuming

 

as there was no indications observed to require ot he will be discharged

 

why dose this keep happening ,,can some one help me ? i rang up and its answer phone but im going write back with all my notes on him,any advice onthis?

 

am i right in complaing about this?

[rainbow queen]

am still fuming and now feel really down about the whole lot

 

i really think that all the lot of them want me to say "OH HANG ON A MIN LETS FORGET THE LOT ITS ME THE MOTHER ISNT IT CAUSE IVE GOT DEPRESSION AND IM SINGLE MUM AND HAD ABUSIVE EX .THATS WHAT IT IS -NOTHING MORE IM IMAGINING ALL THESE THINGS WITH MY SON.

 

leave her to it ,cause theres nothing wrong feel so alone in all this,in fact its so ironic my nephew has AS and hes only been dx after all these years of being odd ect..... maybe thats what they want me to do just give up.

 

sorry for rambling on i feeling all mixed up now.got appointment soon with hospital consultant and this time im taking my sister for help.

sick to the back teeth of all the lot

[Bullet]

Would it help if you asked the school nurse to write to the OT expressing his/her concerns? Then ask for a copy of his/her letter and enclose it with yours to the OT.

[Zemanski]

The OT cannot diagnose or even discount autism as far as I'm aware - you need to see a consultant at the hospital or CAMHS for that usually.

 

has your son seen the ed psych in school? There should be a better indication of his problems from an ed psych report, if your son hasn't seen one then ask at school.

 

did the school nurse write down her concerns? - you could ask her to do so.

 

many of us have had to go through the humiliation of being labelled anxious, pushy, parents and blamed for our children's behaviour in the early (and sometimes later) stages of the process, we were told that we had an ordinary bright child and we were simply putting too much pressure on him!!!

 

Stay with it though - somewhere along the line someone will listen, finding that person just may take a lot longer and be much more frustrating than you ever could imagine when you set out on this route; sorry that's simply the way it is but the relief when you do find the right person is incredible.

 

one thing you could do is to write down your son's developmental history, putting in all the milestones and any unusual behaviours you can think of, any little quirks that may be relevant. This is useful in the long term as you can refer back to see changes, etc, but it also ensures you don't miss out things when you see the consultant.

 

I would send a written response to the report saying why you don't agree with the OTs assessment so that it is on record that you feel it does not give a clear picture of your child's difficulties - definitely need to complain.

 

stay strong, diagnosis is a long hard road to travel

 

<'> <'> <'>

 

Zemanski

[Brook]

rainbow queen, <'> <'>

 

I have had meetings with various bods, where I think it has gone really well and cant wait to get the report,

only to find that they didn't b****y get it at all!! and the reports weren't the account I had of

the meetings.

 

As bullet said, could you get the school nurse to put something in writing?

 

Hang in there, I know you are feeling very upset, and quite rightly. <'>

 

Brook

[phasmid]

Unless the OT has had specific training in the field of Autism how can you know they are qualified to carry out the type of assesment they have? You have the right with most things to ask fr a second opinion, I can't see why this situation is different. If you do insist the person doing the assesment is correctly qualified and ASD savvy.

[Zemanski]

the only thing with asking for a second opinion for OT is the waiting lists - a long process but I agree you should ask

 

Z

[BusyLizzie100]

Rainbow Queen, how I feel for you!

 

My son was referred to OT when quite young (he had physio at 10 months and eventually crawled at 17 months, then walked at two years and was then referred to OT).

 

The OT observed him and gave me tips on how to get him to use scissors (!!!) and put his trousers on himself. Not knowing any better, I said thanks and went away.

 

Shortly after that, my elder son saw a different OT at the same centre who was much more switched on - she did standardised testing with him and diagnosed Sensory Integration Dysfunction. She recommended I read The Out-Of-Sync Child by Carol Stock Kranowitz, which fitted my younger son even more accurately.

 

I went back to the OT (can't remember if I wrote or rang; think I rang first then backed it up in writing) and asked him to look again (properly!). Fortunately, my son's day nursery was in the children's centre so the OT was able to revisit my son and observe him in the nursery. Came back and said OK, let's start sensory integration therapy. No apology! Turns out his SID is severe.

 

It was while reading Carol's book that I first came across autism and started relating it to my sons. I asked the OT and the paediatrician, who came to one of the SI sessions, is there any possibility that my son is anywhere on the spectrum! No, no, no, they said, not at all, he's far too smiley and social and has good eye contact. (I think you know where this is leading...)

 

Next, concerns were raised by his nursery school about his passivity and not accessing curriculum and the paed (bless her!) took this all on board, particularly my concerns, and referred him to Guy's Hospital in London for assessment. Guy's was the best place, she said, because they have a strong OT link and would be able to tease out the truth.

 

And, after a morning spent with my son, they diagnosed ASD straightaway (falling into the category of 'active but odd'), with Sensory Integration Dysfunction and Receptive Language Delay. The Guy's team just so 'got him' straightaway that I've never doubted they were right.

 

My son is now in Year 1 with a Statement and still has OT, although it's not stipulated on the Statement like Speech and Language is - I wish it were!

 

Anyway, sorry to go on, but what I wanted to say is that OT failed my son at first and discharged him when he was actually in great need. Could you go back and apply pressure, ask for clarification or explanation?

 

My son has since had three therapists and the third has just left, not great I know but OT has made a huge difference to him. He doesn't get a lot of therapy and I have to prompt constantly for it - one therapist said she would discharge him but we could come back any time we felt he had a need - think I was back on the phone the next week! It doesn't just go away and I felt it was wrong to leave the pressure of deciding something like that on me.

 

So, Rainbow Queen, be strong and the very best of luck. Let us know how you get on.

 

Lizzie xx

[helenl53]

Lizzie

 

If OT is an important element for your son's development - then shortage of OT s or not - it should be on his statement.

 

If a child has a SEN then ALL the childs special needs should be on the statement at Part 2 and ALL the provision at Part 3 - It is not good enough to disregard the needs just because there is no report or expertise.

 

Perhaps you could request an OT assessment and have this written into the statement.

 

best wishes

 

HelenL

[BusyLizzie100]

Thanks Helen,

 

I know what you meant about getting OT written into part 3 of a Statement; unfortunately it's very hard to come by because it's funded by Health rather than by Education. We would probably have had to have gone to Tribunal to get it, and we'd already had enough delays in getting my son's Statement in place. We felt that it was important my son had a fairly good Statement by the time he started school so he got support straightaway; OT would have made it a very good Statement.

[slt101]

If you do insist the person doing the assesment is correctly qualified and ASD savvy.

If the OT is working in the NHS then they have to be correctly qualfied with appropriate registration with the COT and the HPC. You need to ask the OT if they are ASD savvy.

[gromit]

OT's are just like all the other professionals in that it comes down to their specific area. In fact OT covers a HUGE field but most OT's would probably agree that their "bread and butter " skills are in enabling individuals to carry out their activities of daily living at optimum independence. All OT's MUST be state registered with COT and the HPC. Speaking as a qualified but as yet unregistered OT I can say the degree just skims over ASD's and any relevant standardised ax's. So agree with sIt101 and Phasmid, you really need to ask if they have specifis training and/or experience in ASD.

[helenl53]

I just had a thought - if it is in part 3 - then surely this is funded by education - it is only when it is in Part 5 that it is funded by health. I know that this is why LEA's try to bung S&L into part 5 so that it becomes a health issue rather than an educational need.

 

Anyway - under the new 'Childrens Services' - I thought that there was to be a sort of pooling of resources.

 

If the statement states that direct OT therapy or time is required, then shortage or not, I think the LEA would have to find the service even if it meant going buying in the service from out of area.

 

Best wishes

 

Helen

 

PS - I think that what I am trying to say - is do not let your conscience about lack of funding deny your child the provision he needs. if he needs it - ###### well go for it.

[phasmid]

If the OT is working in the NHS then they have to be correctly qualfied with appropriate registration with the COT and the HPC. You need to ask the OT if they are ASD savvy.

 

 

I didn't put that quite right. I wasn't trying to say the OT would not be a qualified OT, just that they needed to be ASD aware as well.

 

Sorry if I didn't make that 100% clear

[jen]

I would write to the OT department manager asking if there OT is qualifed to diagnose or dismiss ASD (OT do not diagnose ASD). I would then ask for a reassessment straight away.

With sensory intergration dysfunction they are very few qualifed OT who work in the NHS section. In one PCT they may pay for assessment and treatment from private sensory OT as this is a specialized area. In another PCT they do not provide this service at all.

 

Jen

[rainbow queen]

thank you for all the help

i have rang up and lady is on holiday but told someone else how not happy and told her im writing a letter about all of it

which ive just finished to night

going to photo copy it first before sening though.

[asereht]

<'> <'> HOPE YOU MANAGE TO GET THIS SORTED SOON....KEEP KNOCKING ON THE DOORS UNTIL YOU GET A PROPER ANSWER.