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Saneasever

Advice on sensory issues...

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So... things are starting to calm down a little in our household. Still lodging complaints against school, social services and the hospital, but hey, it's nearly Christmas! :)

My question is this... A. has sensory issues that are tenfold since leaving the hell of hospital - smell is a real problem, as is noise/chaos. ANYTHING with vinegar in will not be tolerated - to the extent that we're not having ketchup/chilli sauce/salad cream/BBQ sauce with our meals either. IF we do, (aside from the fact that it puts A. off her food which she then won't eat) A. treats us like we're contaminated for at least the rest of the day - washing our hands/eating a mint/cleaning our teeth - we've tried them all to placate her, but the idea of our 'contamination' won't go away. Eg. Dad eats a sandwich with salad cream and then washes his hands. A. will worry when dad touches ANYTHING afterwards as he's now contaminated and contaminating other things.

We're on an O.T. waiting list, but any advice in the meantime would be hughly appreciated. Many thanks...

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Hi Saneasever

 

I can sympathise with you. My youngest has sensory probs and I have noticed they are worse when he is anxious. If your daughter has been in hospital, I would guess she's been through a difficult time (as well as whatever she was in there for) and this may be a sort of reaction to the stress she's been through coping with being in a hospital environment.

 

I personally would suggest making as little fuss as possible about this and being VERY discrete about using the things she can't cope with. Hopefully as she gets over her experiences it will calm down.

 

Best wishes.

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Depending on how long the waiting list is, you could consider whether it is worth seeing an independent/private OT experienced in ASD and sensory integration, modulation difficulties. They could start you off and diagnose SID, if you do not already have a diagnosis. I was told that when an OT says that it is SID, that a Developmental paediatrician has to 'second' or agree the diagnosis.

I too notice that my son's tolerance to many things increases when he is under pressure or excited. Smells are a big one for him too.

If she finds it hard to communicate how she is coping you can begin to use a scale to give you a better picture ie. 10 is the worse and 1 is mild. If 10 is too high then make it a scale up to 5. Then start to ask questions about the smells she avoids ie. is that a level 1 or a level 5. This should help to build up a picture of what bothers her and to what extent. Because we do not experience what they do, we can often get things wrong, so learning this kind of dialogue will be very helpful to both her, you and school.

Also find out the the sensory things she likes and which calm her down. That might be deep pressure, texture, sound, visual things, movement etc.

And remember that it isn't just that the sensory sensation is bad at the time. Often it lingers for minutes/hours or even days afterwards. That might be where the 'contamination' comes from. Your daughter knows that even after you've washed your hands etc that she will still smell it on you and on the things you touch.

Having said that, keep an eye on whether this is developing into OCD behaviour and mention it to professionals. But usually OCD is linked to feelings of 'dread' and that 'something bad will happen' if they do not complete the rituals they need to do.

Try not to over-react and be matter of fact. With my son his behaviour escalates if he feels I do not understand or that I am attempting to force him to do something he cannot tolerate. So just say "okay, I understand that you do not like that smell and that it is on a 5 for you." At a later date you can begin to work with her in getting her to suggest ways that might help her eg. warning her beforehand, allowing her to use something else to mask the smell, or to leave the room for some time etc. Once she begins to feel she has more control about how she can react, then the other behaviours should lessen. But you need to get the dialogue going.

How does she cope in school around dinner time? My son struggles when the smell of the food is all over the school.

Edited by Sally44

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A.'s had a rough time at the hands of school in Yr 3, but there's a new head in place now who has previously worked at a school with a specialist ASD unit. As a result, school are VERY accomodating now. A. eats lunch in the classroom with a friend or two so she doesn't have to suffer the smells she couldn't cope with last year. That said, if they've got vinegar of any description in their lunch it's a problem... as is 'bacon buttie' day. Thanks for your advice... :)

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