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?

Thank you porridge, i copied that checklist into a word document and filled it out but looking back at the answers is very confusing he seems to be a jumble of things here there and everywhere and im really not sure how to interpret it at all.

The baby voice thing is confusing but you may be right in that hes wanting to be babied by adults he is a massive attention seeker and has to be the centre of everybodies attention at all times its exhausting even the checkout operator commented on it and she seen 1 minute of him. He definatly dosnt pick up on the ques to stop and even when you blatently tell him to he dosnt seem to care that hes annoying others.

Thanks for your help :)

Allonsy, you're welcome.

Keep in mind that the vestibular system is the 'sensory ground' i.e. all the other systems need the vestibular to be well integrated for them to work effectively.
So for example, if you have a good vestibular sense, then you have a good sense of where you are in space when you are standing up. You can do it with your eyes closed. You can walk your way through your house, with a blindfold.

But if you dont, and your vision is cut off (in the dark, pulling a top over your head, moving quickly from a bright garden to darker inside), then the gap in your vestibular system will become quickly apparent. If you've grown up with that it will leave you feeling a bit insecure, no matter what.

Ditto, if you havent a good vestibular ground, and you need it and your eyes to stay upright, then you add a sudden loud noise, the reaction will probably be to startle. And possibly fall over, as the saving reactions from gravity are mediated through the vestibular system.

As a result, therapy will often start with the vestibular system.

Hope that makes sense?

porridgelover You seem to have a lot of knowledge about this. Hope you don't mind me asking a question? We are doing quite a lot of work and OT is incorporated in daily ABA sessions for ds1 and it seems to be having a positive affect.

What I want to know is if the vestibular system can ever be improved to an extent so you don't need OT or is it a lifelong thing and you will always need OT.

Tricky question..that is, there is no short answer.
The vestibular system is functioing by 12 weeks in utero, which is one of the reasons that it is the basic sensory system.
Many of the other sensory systems use vestibular information to 'build' on.
So you can see that if the vestibular is not as it should be, then it has a knock on effect on lots of other areas for the child.
If you have ever had a episode of vertigo, or an inner ear infection, you'll understand how debilitating it is.

I have seen children improve with Sensory Integration to a point where they are unrecognisable from where they started. But they continue to have difficulties.
I think, OT intensively at first, with breaks to allow the brain to integrate what it has learned, followed by 'bursts' of therapy to maintain and continue improvements.

Do also keep in mind, that the research base for the effectiveness of SI is minimal. At the same time, the neuro-imaging that has emerged over the last 10 years, would indicate that there are structures in the brain that do exactly what SI has always anticipated and theorised they should. (Devils advocate here).

Thanks porridge, we shall remain hopeful then. can you quantify what is intensive OT.

DS1 (3.5) has one hour a week with an OT and I would say he probably ges at least an hour of it daily at home/park/soft play.

Realistically, an hour a week is intensive.
You would probably need to be going for about 3 months, then 6 week break, then back. IMO

Like most therapies, its 20% clinic and 80% what you do yourself. Becoming aware, and seeing where the sensory challenges are in daily life is useful. Then you can monitor the demands of daily activities, see when your child is becoming overwhelmed and implement strategies to calm.

I know in some clinics in the US, therapists will see children daily for perhaps 2 weeks, then send home a programme to keep going with. Thats also intensive. Depends on your therapist and what they feel is best going to suit your child.

Is a completely different question, can some one explain what's the difference between sensory integration and sensory modulation please?
Thanks in advance

It's kinda splitting hairs to define the two separately. The terminology around Sensory Integration has changed and therapists will often use different phrases for similar issues.
As best I can understand it the difference is this:

Sensory Integration is how our brains process incoming sensory information, and put it into the 'mix' with cognitive information, language, goals, priorities etc.
So, you can simultaneously drive, and listen to the radio. As your NT brain can cope with that level of sensory info coming in.

But if the level of demands is increased (say you have to drive in mid-London traffic on a wet, dark November Friday evening, with a crying child in the back, while trying to get to an address you dont know) then you will reduce any other sensory demands (or you will melt down like me. ). Melting down in that situation is normal.

Melting down cos you have to get dressed in the morning is not seen as normal. But if your child cant cope with the sensory demands, it's the equivalent of the driving example to him

Sensory modulation is how we respond to the information. See here.

So, one child will respond to hitting their head on a cupboard door by ignoring it (maladaptive and under responsive, will repeatedly make the same mistake), another will say ow and rub their head (adaptive response, will learn not to do that again) and another will scream blue murder (maladaptive, over responsive, may avoid all cupboard doors forever after).

Two of these dont have the ability to 'modulate' IYSWIM

Thanks for your reply and the link, it has very good information.
Have some reading to do

The sensory team handbook www.amazon.co.uk/The-Sensory-Team-Handbook-Hands/dp/098114392X

Understanding your child's sensory needs www.amazon.co.uk/Understanding-Your-Childs-Sensory-Signals/dp/1466263539/ref=sr_1_fkmr1_1?s=books&ie=UTF8&qid=1357065848&sr=1-1-fkmr1

Both recommended by the OT

I have filled out all the question on the sensory checklist, well all the ones i could i left the ones i didnt know at all blank then counted up the ones i marked 'yes' and the ones i marked 'no'

heres what i got -

Hypersensitivity to Touch (Tactile Defensiveness) YES= 13 NO= 9
Hyposensitivity to Touch (Under-Responsive): YES= 4 NO= 6
Poor Tactile Perception and Discrimination: YES= 4 NO= 3
Vestibular, Hypersensitivity to Movement (Over-Responsive): YES= 5 NO= 10
Vestibular, Hyposensitivity to Movement (Under-Responsive): YES= 9 NO= 2
Poor Muscle Tone and/or Coordination: YES= 8 NO= 8
Signs of Proprioceptive Dysfunction: 1. Sensory Seeking Behaviours YES=13 NO= 2
Difficulty with "Grading Of Movement": YES= 5 NO= 2
Hyposensitivity to Sounds (Under-Registers): YES=7 NO=2
Hypersensitivity to Sounds (Auditory Defensiveness): YES= 3 NO= 3
Signs of Oral Input Dysfunction: Hypersensitivity to Oral Input (Oral Defensiveness): YES= 5 NO= 3
Hyposensitivity to Oral Input (Under-Registers) YES= 3 NO- 5
Hypersensitivity to Smells (Over-Responsive): YES= 0 NO=8
Hyposensitivity to Smells (Under-Responsive): YES= 4 NO= 3
Hypersensitivity to Visual Input (Over-Responsiveness) YES=6 NO= 1
Hyposensitivity to Visual Input (Under-Responsive or Difficulty with Tracking, Discrimination, Or Perception): YES= 9 NO= 5
Auditory-Language Processing Dysfunction: YES= 10 NO= 2
Social, Emotional, Play, And Self-Regulation Dysfunction:
SOCIAL - YES= 2 NO= 4

Emotional: YES= 6 NO= 2

Play - YES= 4 NO= 0
Self-Regulation: YES= 3 NO= 1
Internal Regulation (The Interoceptive Sense): YES= 8 NO= 1

Now im confused i was sure ds was under responsive to touch as he ALWAYS has to touch, rub, push against others, always in your face, wanting to rough house etc but he score higher on over responsive? oral input i presumed under responsive as hes ALWAYS hungry and is obsessed with food and rams his mouth but he scored higher on over responsive? i suppose if i cant understand ds myself friends and family have no chance its a minefield

Allonsy, on touch, what you are describing about having to push against others/ touch things, wanting to rough house is not contradicting being hypersensitive.

Seeking to touch things can be a way of controlling the unpleasant stimulus; as he can mentally prepare himself for the unpleasantness, and choose how long to tolerate it. But if someone else brushes against you, or they are administering the touch, then he has less control so it is more fearful IYSWIM?

Pushing against people could be that 1) his poor tactile processing means he cant register how much is too much to brush against and/or 2)it gives him some proprioceptive input at the same time, which is a calming counter measure.

Wanting to rough house is usually seeking proprioception.

Always hungry, can be associated with vestibular processing as some of the vestibular nerve fibres innervate the gut. Ramming food in could be seeking to have a larger force for the receptors in his mouth to register the amount of food or that he is underresponsive to tastes.

It really sounds as if you need to have him seen by an OT trained in Sensory Integration who could do one of the standardised tests with him. They would also be able to clarify the detail of his processing problems, and should be able to offer treatment (or home work at the very least).
Do you have OTs locally?

thanks porridge it difficult to get my head around it all ds seems very complex in general, your posts are really helping. Ds seen an OT for one visit at age 5 she said he had sensory issues and would follow up, then she left and a new one took over observed ds in school and discharged him no meeting with me or anything. He is now awaiting referal via my gp i think to CAHMS as gp thought maybe adhd or asd judging by my description of him, the gp had to refer to school nurse though to make the referal ive been waiting since september and heard nothing, spoke to gp the other day shes going to chase it up again.

allonsy, could you do a list of all the things you've described here (and there's prob lots more that you haven't) and give the written list to the GP.
Would the school nurse be receptive to reading it?
From what you've described here, I would feel your DS definitely needs a Sensory assessment, and possibly therapy.
But, I would emphasise that the OT needs to be SI trained. Not working under supervision of someone who is....to get the nuances, you need to have the training.
The only advice I would offer until you get that, is to read as much as you can about sensory processing. If you can see where your DS is struggling and understand what the sensory demand is on him, you are more likely to see where potential problems are and how to skirt round them.
For example, my DS has Auditory Hypersensitivity...so I now can 'hear' what will startle him, or what will quickly overload him (an echoey shopping centre is hell for him).

thats what i did in september gave gp a list of concerns and she said it would be sent on to the school nurse for referall. His teacher had concerns about fidgeting etc and i presumed would back me up on him needing referall (we discussed it before i spoke to gp) but his teacher has changed and new one short of useless. School dont seem to have big issues though as according to them he is academically average although i have to disagree personally hes almost 7 and cant read?? and he receives some sort of punishment (timeouts etc) every other day at least. I have the out of sync book but didnt find it all the helpfull i feel like ds just dosnt fit their descriptions of him, ive also read up on aspergers, adhd, HFA etc and cant seem to make ds fit anywhere.

We are rural and local NHS very behind im not holding out much hope for a positive outcome :(

allonsy, I hear how frustrated you must be. And upset for your DS.
I went throught that with my DS, when I was being labelled as odd/difficult/attention seeking when I started looking for help for him.
He was diagnosed at almost 8.

Initially, his school also denied that he had a problem....just naughty, couldn't write neatly (as if he had a choice).
Dont give up; IME as he got older, it became apparent to others too.

Would this website help?
Or this?

This is an excellent book. Lucy Miller is an OT who has done lots of research on SPD and is highly regarded.

There will be a positive outcome; you are looking for help, and it will come. Keep plugging at the GP and school and CAMHS.