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sensory processing disorder, proprioception and tactile

(18 Posts)
2specialkids Fri 22-May-09 21:10:45

I was just wondering if any of you had any idea of how long an assessment can take through OT.
My son has been referred to OT. He has just turned 7 (2 weeks ago), and he has all the symptoms of the sensory processing disorder.
He has also been referred to the Physio, who he saw last week along with the OT. They did the movement ABC test and a couple of writing tests, yet the OT has said it will take another few visits to find out whats going on exactly. I am not sure how to help him yet as I am still learning about his struggles and would really like an answer so we can start to help him.
Any thoughts would be much appreciated. thanx

mumgoingcrazy Fri 22-May-09 21:49:49

Hi 2specialkids, my DD2 (almost 2yrs) also has SPD. Once the OT has some idea of your sons needs she'll do a sensory assessment and then put an appropriate sensory diet in place for him. It shouldn't take long. A really good place to start is reading "The out of sync child" and also "The out of sync child has fun". Some other mums on this board recommended it to me and I found it so useful.

DD2 was severely tactile defensive and didn't touch anything or be touched, she also had auditory and visual processing issues. There are loads of things you can do, and many many techniques the OT will do with you so don't fret. Since being on her sensory diet DD2 has come on leaps and bounds.

Flowertots Sat 23-May-09 09:16:07

My daughter has suspected sensory processing disorder but our OT through the NHS has admitted she does not have any sensory integration experience or qualifications. We had been seeing a private OT who specialised in this but the costs were astronomical. She put in place some things we've tried and they've worked but this new OT just seems to be bumbling around in the dark. Is there anyway the NHS would subsidise us using the private OT who does have the qualifications and experience we need bearing in mind no-one in the Borough does? We would much rather use someone whose advice we actually have confidence in.
Any suggestions would be great.

chilliNchocolate Sat 23-May-09 09:22:28

My 6.5 year old son was diagnosed with this a year ago by an OT. I ended up paying for a private assessment as the waiting list of an OT in this area was nearly a year and he was crying every time they asked him to write at school. He kept saying "I'm no good at it" which is a dreadful thing to hear a child of that age say.

"The Out of Sync Child" is excellent so another vote for that from me. It can seem a bit heavy going in places but well worth the effort to read.

My son's areas are fine motor skills, sensitive hearing (auditory issues), concentration issues as a result and vestibular problems in having to keep moving.

A year on from the assessment and excellent support from the school have paid dividends. He is now writing albeit in a haphazard way and has 15 hours of 1-1 support to help him. We are in the process of applying for a Statement which will protect the hours he has.
Best of all he is no longer saying "I'm no good" so his self confidence has soared.

chilliNchocolate Sat 23-May-09 09:25:38

Flowertots where are you based? The OT I saw was lovely and is based in Colchester but she did two visits to DS (in school and at home) to assess him and it cost me around £300 for that and a written report.

Her charges are about £50 per hour plus travelling costs which is beyond me. However, if your DD has a diagnosis and nobody in the borough is qualified to provide therapy then the PCT has to look at how his needs for therapy will be met. If that's providing some funding for private care then that's what they should do. However, persuading them of this may be a whole other matter.

chilliNchocolate Sat 23-May-09 09:26:44

... I meant "her needs" and not "his needs" of course grin

Flowertots Sat 23-May-09 10:52:52

your son sounds EXACTLY like my daughter. I think your private OT may have been the same as ours, Lara Johnstone by any chance?
What is your son's diagnosis? We are still waiting for dd's which we may get in June (fingers crossed). We have a meeting with the social communications team who will hopefully come up with something.
We are based in Hornchurch, Essex, how about you?

2specialkids Sat 23-May-09 15:57:32

thanks everyone. I have already got the "Out of Syn child" and "The Out os sync child has fun". Its him all over. He is very tactile, nobody can touch him at all (or give him a kiss) except me, he seems to tolerate me but only a little.
He screams and cries for hours if something unexpected touches him. the obvious labels, hair cutting, nail cutting etc bothers him.
He also cannot process information ie copying or even from his mind. He knows the alphabet off by heart but cannot write it down without a million other letters popping in here there any everywhere.
He also has very low muscle tone, so struggles with physical things.
His OT straight away suspected all these problems and we did only wait 2 months to see her, she also came to Physio with him to give him some support, as he wont make eye contact or speak to other people unless he is very sure of them. I found the books very helpful but I feel like I am still in a whirlpool of information, AAAARRRRGGGHHH.
I think it may help when the OT actually gives a diagnosis but I feel so sorry for him having to go through all these tests etc, although he thinks they are games.
The last thing the OT said was we were going to have to got through each sense individually and assess each in its own right, it seems such a long haul. I know it will all be worth it in the end as he will get all the help he needs. Its just hard in the meantime.

Flowertots Sat 23-May-09 16:09:08

How confident would you be if your OT told you they don't have the relevant training? Am I better off just paying privately for someone who knows what they're talking about?

chilliNchocolate Sat 23-May-09 16:35:36

grin Lara Johnstone it was. And she was lovely.

chilliNchocolate Sat 23-May-09 16:37:14

Meant to say I am based in Basildon so not too far way.

2specialkids Sat 23-May-09 16:40:53

If my OT said she didn't know much about it then yes i would probably go elsewhere. Can you ask to see another OT on the NHS?
I would push to get the right help though.
My eldest has ADHD and AS and I believe we didn't get the right help and struggled through, he is almost 16 and he has made me massively proud, he is his own man and never cares what people think. I believe thats what he learned from having difficulties, people like him for who he is or not at all.
But like yourself if I thought I would have to struggle with my youngest then I would push till I got the right help and the right person.

mumgoingcrazy Sat 23-May-09 19:48:17

2specialkids, DD2 was severely tactile defensive and didn't touch anything or be touched until she was 15 months. The OT got us doing deep pressure brushing and joint compressions for 6 weeks and she improved massivly, it totally regulates the tactile sense. 4 months later we did a top up month as we thought it was creeping back again and in her latest sensory assessment her tactile sense is now in 'typical' range. Auditory is now the problem with visual being a close second.

The OT will see which senses need working on and then decide which one to start with. To sort out the auditory and visual we've being doing Therapeutic Listening (14 weeks now, 2 more to go) and this is meant to dis-regulate and re-regulate the whole sensory system. DD2 has come on massively and as your DS sounds quite similar to your DS, I wonder if it may help you??

nhsot Sun 12-Jul-09 17:10:19

Hi all! VERY interesting to read all of your comments. i my self am a peadiatric occuaptional therapist and understand your frustration but instead of complaining about the lack of relevnt NHS experience and turning to private OT's what you should be doing is pushing commisioners to improve the post graduate training for NHS therapist then all your children would get the treatment they deserve via the NHS. private does not mean better in anyway and a lot of your comments imply that NHS therapists are incompitent which is just not the case, the OT degree is very hard, full time master of science based over three years. during that time we learn treatment approaches to deal with all walks of life including adults, elderly and children. it is not three years specific to children so of course if a therapist chooses to specialise in peadiatrics then post graduate training is going to be needed. SI is a non evidence based treatment approach that a lot of PCT'S still refuse to recognise as being benficial. and when you consider that to be fully SI trained you need to attend 4 weeks of training at a cost of £650 pound per week! so before you immediately choose private OT you should be checking not only do they have all 4 levels of training but EXPERIENCE of working with these children. training does not mean you can immediately treat the children you see. experience counts for just as much. two private sessions a week would cost the NHS £100+, wuld this not be better spent training NHS staff so that all child in Essex and sorrounding boroughs can have equal and beneficial therapy. you have to remember that PRIVATE is only a way of earning more money for themselves and before they decided to do this they were infact NHS employed!
please dont think that the advice you get from NHS therapist with no formal SI training would not be beneficial, all OT'S are equipped to give basic sensory advice relating to your childs sensory processing difficulties, this is in no way damaging and you will probably find it makes the basis of the advice given to you by the private OT.and one last thought it is down to the peadiatrician to diagnose not the OT, theapists can assess and treat but do not diagnose.

Phoenix4725 Sun 12-Jul-09 17:37:50

ot appointments where i am are 9-12 months waiting and then what support you get is patchy and yes I,m near colcheser to

but can reccomend Bibac they was fantastic with giving me idears that im still waiting from the nhs ot 2 years down the line

nhsot Sun 12-Jul-09 18:41:51

that is a shame the colchester service is not very well equipped, unfortunately it is the length of time you have to wait that must be very frustrating for you. 6 -12 months is not ideal at all.

Phoenix4725 Sun 12-Jul-09 19:05:58

colchester is not well equipped for anything took me months of badgering and complaing to get a salt who was actually usefull as for ot, physio ,orthotics etc ypu wait months inbetween

2specialkids Thu 16-Jul-09 20:57:54

To update you all. DS2 has had a second assessment yesterday, although I am not sure how things went really. She said he did better than she expected, but he likes going there as its different. She did a lot of swing work with him. She said he was very, very shy, definately not, if he doesn't want you in his world or near him then he wont speak to you. She also did a 3yr+ jigsaw that nearly took him 30 minutes (20 pieces) and that was with help from her. I don't get it, she sees him when hes enjoying himself and trying hard yet doesn't see the bad side. ie last night he cried all night, he was exhausted, he wet himself and fell down stairs twice (only the bottom 2 and hes ok, we come down in front of him). Hes been really cranky today and said hes aching all over and exhausted. On the plus side she says she wants to see him a few more times and then she will see him at school also. I just feel really confused every time we go

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