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Opinions On Sensory Profiles ?

ASD FEEDING ISSUES LOW MUSCLE TONE

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#1 tricky79

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Posted 24 January 2015 - 07:09 PM

hi all,

i'm looking into having a private sensory profile assessment done for my 3 yr old son who has ASD, as they aren't available on the NHS in my area.

my sons main problem is food he eats nothing but yoghurts and only if i feed him them. he will heave/vomit if i try him with anything else, and also if the yoghurt gets on his hands/clothes etc. he will not touch anything sticky or wet.

its even affecting his feet now as he had an OT assessment last week and his arches haven't formed very well because he keeps his toes off the floor as he doesn't like the feel of the floor so now his feet are overturning on his instep and he also has low muscle tone which they put down to his autism. OT discharged him as they said it might improve with age if not he can be referred back.

i'm just wondering if any of you have been through a sensory profile assessment and did you find it useful/helpful for your kids? 

many thanks for reading x



#2 Tangled

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Posted 24 January 2015 - 08:09 PM

Hi

We had one done when my son was older (about 10) and it was good as it gave us things we could do to help. It also provided school with lots of things to implement to help him cope in the classroom environment (something he really struggled with).

My son had shoe inserts when he was younger to help with his feet (he was almost walking on his ankle bone - he has hypermobile joints and low muscle tone so sounds similar). Our health visitor spotted it when he was 2 and seemed keen for him to get the inserts whilst he was young and they worked to correct how he walked. If you can help your son cope with the feel of the floor it might sort itself out though like you've put.

Like you we have food issues here (we went through phases of things like only eating weetabix) - the sensory profile didn't really offer us help with this - it is felt now that his limited diet is more to do with rigid thinking focussing on a few things more than anything. It sounds like it is very sensory for your boy though. We were focussing on school issues too so food wasn't concentrated on although mentioned as an issue in the report.

So, overall, yes I think it was good for us and I would recommend it.

Tangled

#3 tricky79

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Posted 24 January 2015 - 08:42 PM

Thanks for the reply . i think im going to go for it as soon as i can afford to as my sons portage worker has just requested an EHCP  plan for my son and think it would be good if it can be included in that as he has been to 2 mainstream nursery and couldnt cope with either so he no longer goes.

finding it very hard at the moment because my sons portage seems to think his problems arent severe enough for specal needs school but on the other hand he cant cope with mainstream so im guessing the more information i can get at the moment the better and take it from there.


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#4 Eggman

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Posted 25 January 2015 - 06:55 AM

Hi there I am sorry to hear that your son has been discharged from OT and that Portage and being unhelpful. Take no notice of what Portage says and if your son is not coping in mainstream start gathering evidence as to why he needs to go to a special school if that is what you want.

 

I was told by County's EP that my son wouldn't get a Statement as he wasn't severe enough which was ridiculous at the time as he was out of control! I just pushed ahead with it and she eventually supported us. Many will try to put you off at every opportunity so ignore. You know what is best for your son trust your instincts.

 

I can't tell you how much it annoys me that our kids are discharged when they clearly need help. If your child has autism they just seem to use that as an excuse to totally ignore all the other issues and refuse support. I was told by the NHS that there was not a source of funding for OT for children with Autism despite my son having severe difficulties.

 

The only way forward is to get private reports, submit them to County and get them to agree to fund support. We did this with OT and are now doing the same with SALT.

 

Shouldn't be this way and not everyone can afford to do this. My heart goes out to those people who are not in a financial situation to be able to do this and just have to watch their children suffer whilst at the same time no doubt fighting school and County. Can't imagine how stressful that must be.


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#5 tricky79

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Posted 26 January 2015 - 03:36 PM

thankyou eggman for the reply,

 

As im new to all this i kinda felt i was overeacting and being overprotective but the more i read on here the more im starting to think we have to fight constantly to get anything done for our kids.

 

I totally felt phobed off by the OT felt like it was a case of he can walk so whats the problem ?

my portage worker is ok just find her confusing because she seems to change her mind alot , oh and she told me i need to be more forgiving of people that let us down ! didn't find that very helpful as i'm a single parent who if i'm honest is struggling with all this :-(

 

I find it very confusing when im told by everyone that early intervention is key but then everyone is saying to me he's only 3 lets see how things go . not sure if this is normal don't want to appear whingy because i know there are alot of people out there worse off than us but its all new to me as my son has only just be diagnosed and i guess i'm just a bit overwhelmed by it all.



#6 Melly1

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Posted 01 February 2015 - 04:21 PM

Hi, OTs vary, depending on their interests and specialism. A sensory assessment is very helpful. S had one at the start of secondary and again when he started college. Very helpful. Is a dietician involved?

Melly1





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