Sensory processing disorder/integration

[alfiemama]

Son is diagnosed with Asd and food phobic, underweight and on shakes for weight. His Paed had also advised she thinks he has sensory processing disorder, but they don't test for it in our area. Camhs have advised sensory issues and would test for it but under the radar as they have taken on a member of staff trained in it. However, they have thrown shakes at the food issues and think its solved and seem to now be ignoring us.

I have found a www.shinetherapyservices.co.uk who will assess for us but it's £350 and £40 an hour. I'm happy to pay this is need be (will eat beans for a month ) as sons needs come first, but how do I know it's legit? Anyone heard of them? They can do the test and offer a sensory diet and will go into school to liaise.

I don't know about this organisation but from having a look at them, they are all obviously bona fide folk so there are no worries there.
Did someone recommend them.

Thanks Moondog,

Someone at the hairdressers mentioned it but she had only just found them.

It's just such a shame I can't get on the NHS.

Expert Dietician?

Book?

Thanks Mareeey, I have that book thanks, while I think it's a good book for helping understand it didn't really give me a solution. Unfortunately changing his diet won't really help us as he is very selective. Sensory diet is something totally different - if this is why you have mentioned diet.

Nope, it was the underweight, food phobic bit.

I'm not great at formal sensory OT stuff, though DS1 finds heavy blankets / sleeping bags /small spaces helpful. We never got brushing done (too similar to hair brushing????).

Why not try visiting your GP and advising that camhs are lacking in the uptake and can he refer him out of area for at least a full OT assessment?

You could try bluffing the "I need a second opinion" sort of request :)

Sensory integration takes time though and does not solve the sensory processing issue overnight. Adaptions need to be put into place within the school environment and staff need to be aware of his individual needs to start with.

Are there other areas that he has issues on or is it just eating issues?

I am asking as I have no suggestions food wise as DS is fortunate in that his issue is mushy foods so he either eats veg raw or no mushed up stuff. Murder if sauce touches peas or biscuit is broken but still eats anything in sight. But I may be able to help out with some other sensory hurdles.

Is Sensory processing disorder a stand alone diagnosis?

Ds has lots of issues, the main one being food and oral sensory issues (teeth brushing, eating) so is being sent for a full sensory profile. Its with an OT which tbh havent been much help in the past other than a few suggestions that common sense had already told us to try

The Shine service looks great

Squeelybean - it is a separate diagnosis but often is co-morbid with other learning difficulties. Although diagnosed by an OT - it is a more highly trained OT - than your standard. DS saw 3 OT's before he started with his current one. the first 3 made not a blind bit of difference to it. The current one, has transformed him - we're a year in, he is a completely different child, but is still not "there" yet.

I havent used them however I have heard hopscotch are very good with sensory integration. We used hemispheres in the past for reflex integration and will be resuming them shortly

Was that via NHS Mrslauhlan ?

Ds has hemi, language disorder, delays and a tonne of sensory issues which we find just as bigger problem as everything else he has to deal with.

The sensory issues have been pretty much sidelined until now by OT who has just dealt with crap like buttons and scissors which have very little impact on our lives compared to a gagging child who's diet consists of 7 or 8 things.

Thank Goodness we have a new paed who is pushing for some help and answers.

Sorry for hijack OP but if we dont have success i might be looking at similar assessments privately aswell

Sorry for the delay everyone - half term - need I say anymore

Wow, I don't know where to begin. Coffpot, good idea about the Gp and out of area, but surely the paed could have done that for us if it was possible? Alfie's problems with food - well he has about 8 foods which we call his safe food, when he gets stressed or we introduce new food he drops something from his list.

He is very orally sensitive, will only eat raw veg and nothing which he would see as mushy yet he will eat grapes - only green though, Apples and grapes have to be green (I know that's the autism though) beige food, dry cereal, dry everything, plain pasta, bacon. Oh he loves sal everything has to be salty.

He is huge on smells. Smells and sniffs everything - also hates messy things and messy hands. He won't eat anything that changes texture for example a chocolate which has a cream in the middle is a no no - separate he would have eaten them but not if they change.

He has only ever (since a baby) drank water in the same bottle (bloody Evian bottles) and only now he is being forced to have these calorie shakes will he have milk and it takes us about 2 hours to get him to drink 1/3 of it.

If we introduce new foods, he shakes like he is having a fit, cries uncontrollably and gags until he is physically sick.

We also have the added complication of gastric issues - he has reflux and if he doesn't eat or eats too little (only has small portions anyway) then he will be physically sick in the morning until about lunch time. Paed said he has too much acids in his stomach.

Sensory side of things - well as well as the above he is a sound seeker (according to specialist SALT) and will hum, cluck, cough and other stims if it's quiet. We have to always have the radio on in the car and during his SATS he coughed repeatedly all the way through (forced cough like your clearing your throat) he however, doesn't like noise so if the hoover is on will cover his ears, hates loud noises and doesn't cope well with it. He also has co-ordination issues and hypermobility which I believe can be a sign of spd also. He's also a hand flapper, jumper and twirler.

Bet you're all asleep after that one?

Unfortunately, it was not via NHS..... We used hopscotch - previously recommended. They were amazing.... Also have some good information on their website.
There has to be other ot's though that are highly trained..... First thing is they need to be able to do is the SIPT (????) test - its the sensory assessment.

thanks Mrslaughan and Squeely hi-jack away - we're all in this together

In the email she sent she mentioned this test
The Beery-Butenica Developmental Test of Visual-Motor Integration would also be completed if appropriate (analysis of results = 30 minutes)

Is that the same, Mrslaughan?

Hi everyone,
I have been lurking around this thread a bit. We have definitely been diagnosed with SPD and OT reckons it's the touch sensation in our case that is causing most problems with food in DS's case.

I have bought as Ds requested Peppa and Thomas fromage frais but when trying it, it's as if he is trying very hot soup. First putting his tongue on it and then tasteing it and then not eating it.

There are a lot of Touch sensors in the mouth (different textures of food registering different sensations) which will fluctuate too according to what else is going on. The various sensory systems work together with the brain. This is what I understand as a lay person. The thing is if you look at SPD on wikipedia it suggests its quite a new thing. That's probably a lot of NHS OT's aren't working with it yet.

I really want a recommendation for an expert to assess ds around SPD and food. Ds is driving us all nuts including school because he hardly eats anything and is around the 9th to 2nd centile.

I often feel like a bad mother and OH nearly insites divorces proceedings over food!

Is Hopscotch the organisation we need to see next? Any recommendations gratefuly received. I think OP really wants this info too. correct me if wrong. People get confused with "sensory diet".

I think Hopscotch are fab....I know another Mum who rang and spoke to Dimitrios at length on the phone, which was helpful - maybe call or send them an email?

mrslaughlan can you give me a brief outline of what they did at Hopscotch how long it took and how much!

I'm thinking of phoning our paed and chatting about it as our local OT is a bit crap and are pretty limited with what they can do with a 30-60 min assessment.

I feel a tiny bit excited having looked at the website that maybe there is someone out there who can help us. Ds has so many problems, we are pretty desperate to help him fit in and cope with school which just isnt happening

It's so hard isn't it? I have found a great SPD specialist through a friend. Can you get recommendations from another parent?

Alfiemama my dd has been assessed using the beery VMI through NHS OT. It's basically a screening test to assess motor skills, visual perception etc. my dd scored so low a diagnosis of global developmental delay was given there and then :( since then dd has been assessed using the ABC of movement and another assessment that assesses all aspects of visual perception. Dds scores from the VMI were 0.5 percentile and her scores from the further tests were in line with this. As a result OT and Pead have since dx co-ordination disorder and global learning difficulties. Dd has also been ref for an MRI as physio has found she has tight tone in her legs, so we are looking at suspected cp.