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lesleyc

Sensory Integration

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My son (now 11) has AS. Recently assessed by private OT recommended by NHS OT!!!. Difficulties identified "Somatosensory Dyspraxia, with modulation difficulties. Test results indicated that x has a Sensory Integration Dysfunction..."

 

He has been started on a Listening Program which the NHS OT said should be v beneficial but which is not available on NHS in our area! Typical.

 

Anyone doing/has done this? What sort of effects/results? I have read lots of background info but would love to know more about how it has helped people.

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Hi. DS has done a Therapeutic Listening Program twice, where he listens to music via special headphones twice a day for 30 minutes each time. I have to say, we noticed no difference. Many people don't, but it's worth a try. On the upside, DS discovered he quite liked the music and often listens to it going to bed

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I heard that it benefits some people, but only for a while. It costs �800 in my area privately eekkk, my son won't wear headphones so it's out of the question for us, but TBH who wants to pay that much if after 6 months you're back to square one?

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the listening program can often achieve very good results, but they are variable and unpredictable.

we charge �400 for full program and usually integrate it with visual processing modification. this is usually throufgh the nhs but sometimes the difference in cost has to be paid - up to a max of �120. sadly we can't give listening program through nhs

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Logan had a course of audio integration therapy (headphones twice a day for 30 mins for only 10 days) in January and I have to say we were lucky and did see a difference. He reacted much less being taken into overly noisy places like supermarkets etc. For us it was definitely worth the money (I think we paid �400). Re the not wearing headphones - I had to pin Logan down the first two sessions and physically hold them on, but after that he was fine, it was kind of like he knew it was helping him and he's just sit and listen.

 

Lynne

Edited by Lynden

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Thanks for everyones replies. It's great to get feedback on other people's experiences - both the positives and negatives.

 

To be honest - our reasons for doing this are to try to desensitise him to noise and close contact with large volumes of people so that he is better able to cope and concentrate whilst in Secondary school from next year. He is used to a small primary school (115) where general noise levels and corrider traffic are not high. His next school is reasonably large with approx. 1400 pupils. Quite a change so I am willing to give it a go on the off chance that it will help. There seems to be a lot of positive info. and data out these (albeit mostly from the States) that shows that it can/does make a difference. I know - all our kids are different - and what works for one may not work for another - and clearly that it what the replies so far have shown.

 

Anyway - I have started him on the programme and after initially complaining that it gave him a headache for the first few days - he is now quite relaxed about doing it every morning and night - he sees it as a relaxing way to start and finish his day. We did have to build up to the 30mins over about 10 days because of the headache issue and he didn't like the way the headphones "felt" on his head. He no longer gets the headaches but is still not 100% "comfortable" with the headphones but he can tolerate them well for 30 mins.

 

We haven't seen any improvement yet - but it's very early days (about 2 1/2 weeks). We are scheduled to do weekly play based therapy sessions in conjunction with this, run by the private OT. They start in the next few weeks and will run for about three months. They will primarily be to address vestibular problems which were a key area of difficulty for him and because the vestibular and auditory senses are so closely aligned. The OT wants to see to what extent, if any the vestibular problems are influencing the other assessment results. The plan is that after three months he'll be reassessed and then the next actions determined. The hope is to move to just a home run OT programme maybe with occasional follow ups with the OT, if necessary. The bank balance and I shall need good evidence to agree if and how to continue !

 

From what I have been told by the NHS & Private OTs, and from research I have done - the programme works best when combined with other activities rather than just in isolation. Certainly Xs sensory assessment results and profile shows that nearly all areas are significantly adrift so it would not make sense to just tackle one without consideration of any of the others. We shall see how/if all this works out for him ... I will report back, whether positive or negative just to add to the info. available on the forum!

 

Just for reference - we were supplied with four CDs and appropriate but inexpensive Headphones at a total cost of �250 via the private OT. These came from the States and the CDs are not available for purchase unless you are qualified in the programme. I did check the pricing on the supplier's website and it seems that we did get everything at cost plus the postage and customs fees. This is a one off cost - you can keep doing the programme for as long as you see benefit/ you wish but progress should be monitored by a qualified person which would obviously add to the overall cost.

 

Personal winge - It does annoy me that Auditory Integration Thereapy or any of the other sensory therapies are not uniformly available on the NHS. It is particularly galling since I live in Herts. where AIT is not available (but their OTs are actively recommending it), yet they tell me that it is in available in Essex and Cambridgeshire! Aaargh...

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My son is doing a session of Listening With the Whole Body. This was through the NHS OT. I get it for free. How I managed that is because my son is diagnosed with Sensory Integration Disorder, but he is also 'showing signs and symptoms' of Central Auditory Processing Disorder, which is also a medically recognised condition. And although this diagnosis was 'suspected' by the NHS hospital they couldn't diagnose it or provide any therapy for it. So I got the costings of a private clinic in London and went to my GP and asked him to support an application to the PCT to support this therapy.

Then suddenly an OT turned up on my doorstep having been trained in the above therapy! So I requested my GP to send me a copy of the correspondence he received from the PCT following his request. It would seem that my argument held some sway, that 'as the local NHS Trust does not have the facilities to either diagnose or treat this medically recognised disorder, that they should support my application to fund this therapy at the XXX clinic in London'. This got the PCT scouting round, and produced an OT who had recently received some training in this area.

So my son is the only child in our LEA area receiving this therapy for free (to my knowledge anyway).

Is it working??

Well I have noticed some improvements. But I have to be honest and say that that could be down to development that would have happened anyway, or it could be down to the increased level of SALT input he now gets. But I have noticed improvements in the following areas.

Easier transitions. Eg. i'll say 'we've got to go/turn off the TV now' and he just does it. Not every time, but 80% better than before.

He's holding more conversations. Previously he would ask me something and I would reply and that was it. Now the conversations passes between us 4 or 5 times.

He has started singing - he never sang before. Strangely he is showing an interest in ABBA!

More joint attention skills. Ie. paying attention to what other people in his environment are doing.

Using voice tone to express emotions and recognising voice tone in others. Eg. if I said 'WOW!' he would now ask me 'what is it'. Previously he wouldn't have noticed.

Wanting to play more.

He is beginning to use some real imagination in play rather than using things he has already seen on TV/DVDs.

He is showing some ability to see that something might seem funny to us (eg. someone falling over), but that it isn't funny for the man who falls because it hurts him. He actually said that, which I thought was very good.

School have said he is joining in physical games such as football - he used to avoid this like the plague.

After he has finished this session I will purchase a DVD player and headphones and get him listening to more music.

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This sounds amazing.

Does anyone know how to get an OT assessment on the NHS - we were referred 8 months ago and still no indication of when we might get an appointment.

Similarly can anyone recommend a private OT in sussex area and what sort of price am I looking at.

 

Thanks

 

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