How much OT does your child get?

[LizK]

After waiting over a year and navigating the waiting list for the waiting list we have finally seen an OT. Had to persuade them to do a sensory assessment as they originally just were assessing for dyspraxia which he hasn't really got. Had the sensory assessment last week which concluded that he is hypersensitive to sound and hyposensitive in proprioception, vestibular sense and to touch which was no suprise but explains a lot! The OT said he probably had difficulties with sensory discrimination and integration as he has problems 'tuning out' extraneous noises and easily gets overloaded. I asked about visual perception testing but they didn't seem to know what I was on about and made me feel a bit stupid

 

They made a few recommendations of activities and equipement to help DS and agreed to see him at school for one or two sessions before discharge. Am not too happy about the latter because he has sensory issues at home as well as school and they just seem to be focusing on changing the external environment to help his sensory problems. From what I've read I know this is an important in sensory integration problems but have read too that OTs can do work to try to help the underlying problems and when I asked our OTs about this they again looked blankly and said they didn't do it Today we had Adam's final session with the independent ST who said that she thinks his sensory integration problems are a big factor in his speech delay, he's got the skills and vocab but is fragmented and felt SI work was an important as OT.

 

I've discovered that one of the paed OTs is trained in SI work so wondering now whether to make a fuss and see if Adam can be referred to her. Don't know whether I am being unrealistic though and doing my neurotic mother act. Thing is don't really trust the OT dept either as they are cost cutting and now refusing to see any child over the age of 9 with dyspraxia to save money and cut down on waiting lists which I think is appalling and wonder if I'm being fobbed off for similar reasons. Does anyone else see an NHS OT for SI work and if so how often or how long? I know ST here is not very often but at least they keep the child's case ongoing whereas OT seem to want to process you asap!

 

Lx

[Lynden]

Hiya Liz

 

I think I would push to see the other OT to be honest. We finally saw our new OT last week as you know and I was quite disappointed with him too because the one thing we've been consistently told is that Logan needs a full sensory profile done because he has so many issues, but this OT wanted to deal with other stuff first - ie the toilet training ######!!

 

Will see how things go though. It is annoying to be so dependent on people for help and just not get it.

 

Lynne x

[Bagpuss]

Liz,

 

Before our youngest dd began school the OT service was absolutely superb. We couldn't of wished for more. Then she transferred to school services upon starting reception and its been a whole different ball game....and not just for OT's. I've not seen hide nor hair of one since and she has muscular dystrophy too. Our dd's physio decided to carry out the sensory questionnaire on our dd and asked us to fill it in, which we did as it was obvious that our dd has alot of sensory sensitivities. We waited, and waited weeks to hear back. Everytime we rang our physio she said the OT dept were short staffed and no one had even looked at it yet. Eventually after virtually stalking her, she got it marked...but this was months later. We've still not had the report and the questionnaire was handed in months ago. The physio gave dh a brief outline of the summary over the phone, but thats been it. I've rang and rang again and been told the lady who types the reports doesn't work thru the summer hols so we we've no chance of receiving it at least till Sept. Our physio also told us that there was a years waiting list to see an OT in our area......

[Bullet]

None. The assessment concluded that as Tom's fine and gross motor skills were ok and his main difficulties were with communication and social interaction skills he didn't need to see an OT. I'm quite doubtful to be honest, I'm pretty sure there's more sensory issues than were apparent. For example I said he'll only eat soft food, or food that will become soft in his mouth which hasn't helped his pronunciation of words I don't think. On top of that he loves smearing his food (and the product of his food sometimes ) around the place. He also becomes more shut off and less responsive the more open and noisy the environment is, he responds the best to silent signing, followed by singing, then saying and signing. He seems to love big hugs and deep pressure, he'll often lie with his back and head pressing really deeply into me. Oh yes -and he's also started biting for no apparent reason, he'll chew on my jumper (he likes to chew on clothes a bit) and then sink his fangs in.

He's due to start at the Special Nursery in under two weeks, so I'll see what they say about it.

[Tez]

A waited 18 months for an OT assessment and it was only carried out then because it was needed as part of the assessments for his statement. The conclusion was that A's sensory problems were so severe that it is virtually impossible for him to function outside of the home, and the recommendation was that he should be educated by the LEA inside the home. It concluded by saying that the OT department did not have the resources to offer ongoing support or therapy.

 

A's sensory problems are extreme, he's 15 and I recently found him on his side in the bath completely shutdown due to his ongoing inability to cope with the feel of the water, the noise of the pipes and smells of the bathroom. His Consultant has written back to OT asking if they feel sensory integration therapy would be of benefit and if so she is going to try and get the trust to finance it privately.

Edited August 25, 2006 by Tez

[lil_me]

Nothing Autism isn't in the criteria for an assesment in my area, just get the sorry our services are very limited and your son doesn't fit our criteria letter if you get a referal. They won't even assess.

Edited August 25, 2006 by lil_me

[jlp]

They've never even been mentioned to us - I've only heard about them through this board.

 

Who has referred other people here? Or have you self referred?

 

Also is an OT assessment a standard part of being assessed for a statement (as hopefully G will be assessed starting September) or is that dependant on area?

 

Sorry for adding yet more questions to the thread!

[Tez]

OT is not part of a standard assessment for a statement, but if your child has seen an OT then they are asked to contribute their advice. In A's case the LEA asked the OT department for advice because of the extreme nature of his difficulties and they prioritised his assessment.

[Karen A]

Hi Liz I thought it worth mentioning that a GP can also ask for an OT assessment and this could be another avenue to try.Ben fotunately was referred by our GP as she thought he might have DCD.This was fortunate for us.He is able to get OT as he was Dx DCD and obtains help from the DCD service.Ben was subsequently found to have social communication difficulties and could easily have been Dx Asperger syndrome indeed he gets speach therapy via ASD outreach.However I was told that if he was Dx ASD he may no longer get OT because it is not funded in our area for children on the Autistic Spectrum.If you have gone to sleep and want a simple opinion if you know of an OT with sensory integration experiece or knowledge do all you can to get a referral however much fuss you need to make.Karen

[dooday24]

STIIL WAITING FOR REECE TO SEE AN OT THEY JUST KEEP SENDING ME FORM TO FILL OUT EVERY FEW MONTHS

[jlp]

OT is not part of a standard assessment for a statement, but if your child has seen an OT then they are asked to contribute their advice. In A's case the LEA asked the OT department for advice because of the extreme nature of his difficulties and they prioritised his assessment.

 

Ah right!

 

That's a shame, I thought it meant they all get assessed by an OT during the statementing process! Should have known it wasn't likely!

[jen]

OT in our area are not qualifed in SI therefore they are of little use to ASD kids with sensory issues. In the next trust to us they do refer some children to a private OT. (The one our son is seeing).

 

OT has helped my child, its one of the things that has consistantly made a difference, however it is costly and time consuming.

 

 

Jen

[bramblebrae]

I'm seeing the school doctor on monday to ask her to refer Stephen back to OT. He was seen by OT during his diagnosis and shortly after and was discharged. Now he's 7 and cannot ride bike with stablisers and falls off scooter too. He can climb around on anything though except balancing things. I never knew OT dealt with sensory problems so this topic has been of great interest to me and I just hope OT here does SI too as I think Stephen has a problem with his sense of smell and it is really hampering his diet. He still has problems with pencil control etc too which they said would get better over time but I can't see it yet at least. Just keeping my fingers crossed the doc does the referral and the waiting time isn't to long and that they can do something to help! I'll let you know what happens - I've no idea whether the service is good bad or stretched here at all.

 

Lorraine

 

ps on referals I was told by an OT I know and had discussed Stephen with her that I was best to get the referal through the school doctor or I think shes sometimes called community paed, if your child is not at school yet you should still be able to get assessed by one I'd hope. Their service is based at our main hospital and I contacted them directly there as school took months to arrange the appointment with her (I've been trying to get one since easter and thats just for a referal onwards!) She says she has to assess Stephen neurologically before she can refer him - I'm not quite sure what she means by that! Anyway I was told this was the road to go down because the GP's can't or won't refer not sure which.

Edited August 26, 2006 by bramblebrae

[smallworld]

We finally got an OT assessment for our 6 yr old ASD son after asking for over two years.

At the assessment we found out that the OT was deaf and relied on lip reading, which was a bit tricky with our son who won't look a stranger in the eye much and is constantly on the move. The OT quickly realised she wasn't going to get anywhere in the 'strange' room at the hospital and arranged to see him at school within a few weeks, she is now setting up a programme that his LSAs can produce within school.

She did mention to me that we would probably get more appropriate help from a local autism specific charity

So it's a 'wait and see' situation here (elder son is now on her waiting list too !)

 

wac

[elainem]

our waiting list for OT is 2 years. in the end we paid for private OT - our's is fab she is autism specialist and SI trained. it's expensive though but we only see her twice a year and follow the programme she gives us. we have now managed to have statmented termly OT sessions- we got this because the NHS OT didn't reply to the caseworker so in the end had to statement our private OT.

 

Elaine

[Daisydot]

Even though OT is on my son's statement - in reality he gets zip all ! We did have yet another assessment the other day and now they have decided he probably has SID as well as everything else. We paid for private OT for nearly a year - cost a fortune, but we felt it was worth it at the time and its really all he has had, apart from a handful of OT sessions about two years ago.

 

Good luck with getting OT, if you can aford private Id go for that, coz you will be a long time waiting.

 

Daisydot

[bramblebrae]

Hi, as posted above we saw the school doc today she is a bit dubious whether he needs OT or not and thinks it may just be his ASD not actual motor coordination. She said she would refer him to get another assessment anyway. I discussed his eating again and his sometimes memory lapses or sometimes reluctance to deal with needing number 2's and occasionally number 1's and the ensuing mess - she said she would refer him back to the clinical psychologist as she might be able to help with these issues. So overall quite productive, I mentioned I thought it was a sensory thing with smell which affected his eating and his refusal to try new foods but she just said the clinical psych should help didn't mention OT being of any use with that so I'll have to wait til assessment and ask OT directly whether they do SI therapy.

 

Quite pleased though with results. Stephen was completely wild as he usual is when we see her, we always see her in the parents room which is small and cluttered and has a piano which Stephen won't leave alone, it really is completely inappropriate place to assess any child let alone one on the spectrum. She even had to examine his tummy with him lying on the floor and her kneeling as there is nowhere else. Whenever I've seen him in school he is always really wild and dosen't seem to be able to listen for more than 2 seconds but the school always report he has been good in class and doing his work quite well. Maybe it's cause I'm there but I never really see such wild behaviour at home even when he was hyper after school last week it wasn't quite so extreme as today.

As usual what I see and what the school say seem complete different!!

 

anyway I'm for now with referrals though I've no idea how long they'll take to get.

Lorraine

[LizK]

Thank you everyone. Why am I not surprised that most of us are getting poor OT provision. Makes me mad especially when I read more and more about sensory issues being at the heart of autism. Am going to push further though not convinced how successful I will be but if you don't try you don't know! Would ideally like him to have OT in his statement but think I might be on a hiding to nothing with that one!

 

Lx

[Karen A]

Hi, as posted above we saw the school doc today she is a bit dubious whether he needs OT or not and thinks it may just be his ASD not actual motor coordination. She said she would refer him to get another assessment anyway. I discussed his eating again and his sometimes memory lapses or sometimes reluctance to deal with needing number 2's and occasionally number 1's and the ensuing mess - she said she would refer him back to the clinical psychologist as she might be able to help with these issues. So overall quite productive, I mentioned I thought it was a sensory thing with smell which affected his eating and his refusal to try new foods but she just said the clinical psych should help didn't mention OT being of any use with that so I'll have to wait til assessment and ask OT directly whether they do SI therapy.

 

Quite pleased though with results. Stephen was completely wild as he usual is when we see her, we always see her in the parents room which is small and cluttered and has a piano which Stephen won't leave alone, it really is completely inappropriate place to assess any child let alone one on the spectrum. She even had to examine his tummy with him lying on the floor and her kneeling as there is nowhere else. Whenever I've seen him in school he is always really wild and dosen't seem to be able to listen for more than 2 seconds but the school always report he has been good in class and doing his work quite well. Maybe it's cause I'm there but I never really see such wild behaviour at home even when he was hyper after school last week it wasn't quite so extreme as today.

As usual what I see and what the school say seem complete different!!

 

 

Bramblbrae Hi I thought I would mention I read what the school doc said re whether it is asd rather than motor coordination-I think it is not important OT would be helpful if there is a problem it does not matter why.

Karen