Looking for info on sensory issues to pass onto others

[Allonsy]

Specifically sensory seeking as that is what ds1 is believed to be. Family dont understand it at all and why ds is the way he is and have asked for some information. Ive got the out of sync child and various print outs but nothing that summerises it all in one place and im getting confused trying to take bits from here and there with only my own limited understanding. Can anyone link to anything good?

[Dev9aug]

I posted a link to a presentation here in this thread hopefully that might be of some use to you.

[mrslaughan]

Sensational kids - I found a more approachable simpler book than out of sync child.
DS is sensory seeking.... Or was sensory seeking, he is really well modulated now , so it is not an issue now. But the best explanation about him has been written by his OT for his school. Is your DS seeing an OT?
It's just the whole sensory thing is so complex , an each child is so different.
For example DS is sensory seeking, but when overloaded becomes overly sensitive to touch ESP on backs nd shoulders. Example was when he was overloaded at school and his friend fell behind him and touched his back - he thought he had attacked him and absolutely went for him.... Really shocking and embarrassing.....
Anyway OT has really teased out the details of DS disorder and put it very simply.

[BackforGood]

Just marking place as I know a little about this but not enough, and am hoping to learn more!

[lingle]

the sort of "original and best" is

"Sensory Integration and the Child".

[piglettsmummy]

Does anyone no how many 'features' they need to have to be considered or a diagnosis? Looking at that link dev has posted my daughter has all but 5 issues mentioned on that stick man drawing!

[HappyJazzy]

I am wondering if my 4 year old has some sensory issues . . . not sure what to do about it. She really does not like loud noises, covers her ears- was the only one today at a pantomine to cower and cover her head. She can not cope very well in crowds either, and usually will have some sort of tantrum (I think to get away from it all). She can really blow up and have massie tantrums, where ever she wants and has done so since she was about 18months old.

She is quite well behaved at school though, does not have tantrums there, so she can control it. We have other children who do not behave like this (older and younger) so I don't think its our parenting, but am really struggling with her at times and it is affecting our home life and my marriage. I know what I have described does not sound that bad, but I think she makes her life so much harder than it has to be and I feel I'm failing her as a parent.

Who can I ask for help with her- I don't want to get her labelled at school, by talking to her teachers and I wouldn't really know what to say to the GP. Sorry if I've hijacked your thread OP, but I'm really not sure where to post . .

[Dev9aug]

happy an occupational therapist will be the person who can help you, you have to go through GP/Paed or you can see one privately.

[HappyJazzy]

Are they all as good as each other? Do I just google and go to who ever is closest to me? (If I go private)

[mrslaughan]

No - they are definately not al as good as each other when it comes too Sensory issues - DS has seen 4, with only the last one making a huge difference - the others made no diff at all.
I am not sure what qualifications you should look for - someone on here will know, but we went and still go to Hopscotch in Harley st in London. Dimitrios did the assessment - and DS sees a combo of therapists there, including dimitrios once a week...I honestly could not recommend him/them highly enough.

[madwomanintheattic]

Happy, we just did a desensitisation programme ourselves for the auditory stimulation. We always use the first minutes in a venue to point out the speakers, prepare them for loud noises, remind them of what to do in case of overload (hands over ears good, screaming bad). Dd2 closes her eyes as well. We visit random loos in shopping centres and inspect hand dryers (we had to wait about three years for noise lol) and we try to catch her hand if we see a lorry or bus coming (the noise would cause her Moro to kick in and she would collapse). We also 'ground' her by putting 'one hand on the car!' If we are loading etc. that way even if an nexpected noise occurs, she has something to connect to.

She wore sunglasses in supermarkets for a year (it took us two long years of being non verbal and her screaming in stores) but is now not sensitive to strip lights. Touching and eventually massage (long time before she could tolerate) means she isn't so sensitive to touch/clothing now.

The only residual sensory issue is her love of speed/ spinning/ swinging. She is learning to ski and loves to sledge! for years she couldn't climb the ladders to get to slides (she has other disability which impacts) so we would cart her up and plonk her on.

You can make a huge difference yourself if you don't have access to a decent OT. We just did it ourselves because she had way too many other appointments (including regular OT lol) and we couldn't face any more adding in.

[HappyJazzy]

Thank you for your replies, we are in London so I will contact hopscotch and see if they think an assessment would be a good idea. I really appreciate it, I have never really said out loud what I have written, but something has to give.

[EllenJaneisstillnotmyname]

Happyjazzy, some of the 'symptoms' on the stick figures are opposites. Your DC might be sensory seeking (hyposensitive) or sensory defensive (hypersensitive) so you wouldn't be likely to meet all the points. DC can be both hyper and hypo to different senses, eg hypo to movement so seek movement by flapping etc, and hyper to noise so spend a lot of time with hands over their ears. It's unusual to be both hyper and hypo to the same sense, but this can also happen. Good luck with your assessment.

[porridgelover]

allonsy and happyjazzy.
I didnt see this thread til this morning busy scoffing choc.
This has good info on sensory processing. The ins and outs so to speak.

Also here which is the grandaddy of info on SI.

Allonsy is your DS sensory seeking in one system only or in general? Its hard to explain to people...no doubt it has taken time for you to get your head around it?

The way I explain it is in relation to the noise of fingernails on a blackboard. To most people, that sound sets their teeth on edge. For me, it does nothing. So you could say that I am under-responsive to auditory stimuli. Or that other people are over-responsive.
A child who is sensory seeking (in general) is under-responsive. But as our brains need sensory information to make sense of the world, the child will then seek more intense stimulus to get the information that their brain craves.

For example, a child who has a NT brain will integrate vestibular information early in their development; they will seek up/down, twirling, rocking movements at an appropriate age. But they move on once their brains have integrated the information.
The non-NT child's brain needs more; so they will often be seen twirling, hanging up-side down, seeking to be on a trampoline etc. If this is happening in a classroom then it becomes inappropriate and is seen as a problem.

As I've come late to the thread, that may be of no use whatsoever but hope it helps.

[HappyJazzy]

Yes porridge that makes sense- but it's odd because she really reacts badly when in crowds/ loud noises; but on the other hand is always on the move climbing, jumping, running off, no fear (unless she's in a crowd- then she usually refuses to walk). As a baby/toddler I nick named her (lovingly of course) "concrete head" as she never seemed to bother if she fell over. She now goes to either extreme if she hurts herself- either no response, picks her self up and gets on with it, or completely inconsolable. I don't know? maybe it's me? I'll see what the experts think, even if they can help me to understand her better and parent her differently.

[porridgelover]

Thats interesting Happy.
To me.....reacting badly to crowds/loud noises might suggest that she has difficulty making sense of auditory information; that is, she is over-responsive to sounds.
At the same time, its possible that she is under-responsive to vestibular information- the loving climbing/jumping might suggest that she is looking for more intense movement to get the right level of info for her brain. Think of how you might turn up the sound on your phone if you were concentrating on a call in a noisy station. She is trying to 'turn-up' the vestibular information.

Re the falling over ...that might suggest that she has trouble with tactile or proprioceptive info. And just to confuse you even further, any of us can 'switch' from under- to over- responsive. Which may be why she sometimes cant cope with a minor fall and sometimes seems not to register it.
Again, think of how you are if, say, you are hung-over (do try to imagine it ). How a noise that never bothers you will be extremely irritating....just because your brain is already irritated and so having difficulty integrating the information.

Many children with sensory processing difficulties will do similar....they can cope with stuff in one scenario but not in another.

[Dev9aug]

mrslaughan we also go to see Dimitri at Hopscotch every week. We go there every Wednesday at 2. He worked with ds1 once in Kent and he was so good that we switched to his clinic the following week. We have only done 5 sessions so far but the difference is quite amazing and very obvious(well to us at least)

[thegovernor]

My DD has been seeing Dimitrios at Hopscotch for the past six months. When she first went she was barely eating due to oral and tactile sensory issues. She also has issues with sound. Every one of her sensitivities has improved massively and this has had a knock on affect on her disposition. It's quite incredible how effective OT has been. Good luck.

[Allonsy]

Sorry not got back to this been pretty full on with christmas since i posted. Porrigelover im honestly not really sure what ds struggles with or what causes his reactions at all tbh. When he seen the OT a year and a half ago she suspected issues with his propriceptive and vestibular senses?. Ds' symptoms are basically lots of fidgeting and bouncing he tiptoe walks, he has a somewhat uncontrollable urge to touch, he struggles greatly outdoors always runs ahead, never walks he skips and jumps, Shops make him look like a really badly behaved toddler, touching, bouncing, 100's of questions about everything fired out usually with no interest in answers just like a wind up toy. Hes rarely bothered by noise loves loud music, tv etc occssionally reacts to sudden noise that he didnt expect. Has sensitive eyes dislikes the sun, hates the flash on a camera frequenty watery eyes but on the other hands sits practically glued to the tv screen hes that close and likes brightly lit rooms think 70w bulbs. Loves crash banging games lots of roughhousing etc but dosnt like gentle touch very very tickly it dosnt make him upset though more manic hysterical laughter at say me attempting to buttom up his top. Over reacts big time to pain worries about the slightest mark, blemish on skin. Hes very babyish lots of very silly faces, puts on baby voice always when talking to strangers (i cant work out what at all on this one) the biggest chatterbox you will ever meet never stops talking, making noise, whispering.... a checkout operator in supermarket earlier asked him what santa brought - cue baby silly voice, bouncing, telling her EVERYTHING he got for christmas he had to be prised away.... you get the idea.

Trying to put all above plus some... into words/reasons/information for others to understand is proving difficult.

[Dev9aug]

thegovernor so you mind me asking how old your dd is? We have quite a lot of issues with food/chewing as well so I will be interested to hear what stuff you were recommended for oral/motor.

[thegovernor]

Dev9aug - my daughter is 10. Hopscotch did lots of work on whole body sensations at first. She is both over sensitive in some areas and under sensitive in others which apparently is pretty common. The whole body stuff awoke her senses and made her more receptive to trying new sensory experiences. I brushed her whole body every day and wrapped her up in blankets. We also tried many times to massage her whole body with creams but even after 6 months she is very reluctant to have Any creams on her body.

Her face area is particularly sensitive. They told me to use my fingers or get her to use her fingers to press and massage around her cheeks and mouth area. They also suggested getting her to put her fingers in her mouth and to explore her mouth with her hands - she was never actually able to do this as she found it too uncomfortable.

I think the whole body stuff just was the most effective. When we went to OT her diet for the previous 8 months consisted of thai sweet chilli crisps, cashew nuts and bread only. Her diet is far from normal now but she is eating pasta, chicken, noodles and we've been able to successfully introduce lots of new tastes and textures. She seems far happier to try new things (of course on her terms).

Teeth brushing and face washing are far less of a fight now.

[Dev9aug]

Thanks thegovernor, we have been told pretty much the same things. We always thought that ds1 didn't have any sensory issues as he was so passive. We found hopscotch by chance as we wanted to build on his confidence. It has been an eye opener how many issues he really has. Hope ds1 is able to make the same progress as your dd.

[thegovernor]

I hope it works as well for you.

We were recommended hopscotch by a consultant at the royal free hospital because nhs OT in my area didn't have specialist enough knowledge in sensory related eating issues.

I would recommend hopscotch but Dimitrios does try and squeeze you for every penny he can get. Worth it if it works though.

[thegovernor]

Oh yes and initial assessment report did make it sound like she was 100 times more impaired than she is. When everything is listed in black and white it can seem a little overwhelming.

[Dev9aug]

Dimitrios does try and squeeze you for every penny he can get. I know all about that.

We have been going for only 5 weeks now and it's definitely been worth it. It is likely to continue for about a year for us so i have been told. Thanks again.

[porridgelover]

allonsy I posted this further up. Its a sensory checklist (most OTs will use a standard one but this one is online). It might be useful to order the things he has difficulty with.

Vestibular can show as: bouncing (seeking), never walks, skips and jumps (seeking)
Auditory can show as: rarely bothered by noise (under-responsive), loves loud music (under-responsive OR just to confuse you, could be that he used rhythm to 'organise' himself OR could be that he used loud to block everything else)

Visual can show as: sensitive to sunlight (over-responsive), dislikes flashes (over-responsive), likes brightness and TV (both are constant and predictable)

Proprioceptive can show as: seeking rough-housing (calming to a dis-organised sensory system), Loving crash-banging (ditto)

Tactile can show as: odd reactions to touch. (Maniacal laughter is usually sysmptom of overarousal/stress. I would follow it with deep pressure e.g. heavy hug, wrapping in a duvet, tug-of-war.) Over-reactions to unexpected touch, appears to be in pain.

The babyish voice etc I cant pin as being a sensory issue....but if the world is a very demanding place for you, adopting a babyish persona will attract more 'minding' from adults. And having a poor sense of vestibular/space/timing issues, would also make it difficult for him to understand when to stop talking, social rules etc.

Hope that helps.