Hates lights indoors - Help

[kyz1981]

Hi I started a thread recently about some changes in my DS- Mainly because his sensory system has gone haywire.-Help with working out what is going on with my son- Regression/illness/diet?

He is now hating all the lighting in the house even when dimmed and this is making the mornings a nightmare. - He has always hated natural light but tolerated the lights at home- now he screams and screams and tries to climb up the wall to get to the switch- so for the last 4 mornings we have sat in the dark.

I have tried Sun glasses but he wont wear them- has anyone else got any tips.

Have taken him to GP, they can't see any signs that he is unwell - but he has dramatically changed with reactions to sensory issues and is now harming himself by picking at his face.

I am trying to contact my private OT to get an appointment ASAP.

Any hints would be greatfully received.

Thanks

[porridgelover]

A couple of things:

As zzzz says, how does he react to different light sources e.g. candles, christmas twinklers, torch that he holds (and so he controls it), battery operated vs plug-fed lighting?

Is there any possibility that he is a child who is has hypersensitive hearing and the 'buzz' of lighting is upsetting him?

Could it be the 'transition' that he cant tolerate i.e. going from dark to light? So would he manage if there was a low level light left on all night, which was gradually turned up (by him?) in the morning?

You're probably already familiar with this.

As a general rule, proprioception/heavy work will help a child to calm when they find a sensation over-arousing. Does he have a weighted blanket that he could use as a 'den' while the lights come up?

You may have already worked through all of these. Good luck, he sounds miserable.

[kyz1981]

At the moment the TV is fine- he loves it and always has, he has always hated natural sunlight in his eyes and this has always triggered a meltdown.

He used to stare at lights in the supermarket and has never before bothered about lights inside the house.

I did wonder if it was transition from dark to light, so I have just tested the theory by turning the lounge light on whilst he was engaged in his NG toys and he screamed- so I think it is the light.

He is under responsive to sound - well used to be and does not startle or blink at loud sounds or turn to sound (Hearing is fine).

He does have major sensory difficulties and we have been working on these for the last 15 months with a private OT- so I am trying to contact her as he has regressed to how he was when he was just over a yr old and now has the physical strength to resist- making shoes/socks/clothes/car seat a major battle- and meltdowns lasting so much longer.

I am using spinning and other bits of the sensory diet- I am going to make a pecs card of the light to try and warn him, but he has very little receptive language adding to his behaviour. I have not got a blanket but I have got a weighted lap cushion so I am using that to try and calm him but I will now try and calm him before we start something distressing.

I just have no idea what has triggered this massive bout of sensory disregulation :(.

He has just started to say No - although much as he says it he will say it to anything and everything even if its something he really wants - but this is progress to us and he has started mirroring words and pulling us to things he wants- so I don't know if this development has sent his sensory world haywire!

It has been going on for a week now this dramatic change in behaviour and I have tried calpol, nurofen and even taken him to the drs as it is such a backwards step- but all the dr can tell me is that there is nothing wrong with ears/chest/temp ..

He is ok and quite happy when left to his own devices he will spin happily and play with his NG toys- so I am thinking its not medical.

He sometimes wears hats so I will try thats.

Thanks so much for your replies - it really helps to have others insight and ideas when I am trying to run in water with him, xx

[porridgelover]

I wonder (and may be on completely the wrong track here but) if he is starting to say 'no', would his behaviour be the action of saying 'no' IYSWIM?

As in, if he is only getting the concept of having control over his environment, that 'no' means it doesnt happen, then the aversion is something that was always there but he can now act on it.
I havent explained that well.

[kyz1981]

Hi, I know what you mean and that is something that we think it may be also- kind of learning cause and effect of his environment, I have a SALT app tomorrow and have managed to get through to my OT who is coming on Thursday.

My OT said it could be a regression as they don't loose all skills and 2 1/2 is a common age- I think its a combination of the two and the fact that my DS is so rigid makes it hard anyway but when he is overloaded its a nightmare.

If it is the control over the environment thing then, can assume there will be some very stormy times ahead as he does not have the language to explain and his receptive language is very poor even with visual clues.



I am just worried that I am missing something obvious and will kick myself later

[porridgelover]

Yes, if he has just learned cause and effect, it sounds plausible doesnt it.

What is he motivated by? As in, what could you use as a reward system. If you are in for some stormy times, then when he does handle challenges well (or well enough) then using an immediate reward 'comunicates' as effectively as visual or oral language.

[kyz1981]

Not really sure what he is motivated by, its really tricky as we don't know what he understands, he learns by memory so everything is mirrored from language to routine but it is specific to that memory in that place at that time and everything has to be exactly as it is /was.

He loves Night garden, peppa pig, and IPAD and we are trying to get him to make choices so offering him something he wants with something he doesn't but this is a long process.

He understands less than he speaks- his speech is all copied from phrases he has heard-and some speech is only used in specific routines at specific times.

He is complicated I have tried offering the IPAD, NG on telly as soon as he has got dressed had his nappy changed and he is so upset he pushes it away, but maybe I will find something new and very visual that he will like and just stick to that one reward and only use it when we are going to get him dresses/shoes/nappy and see if that helps.

I guess i just have to try and look at this somehow as progress and try and tame some of this now - Thanks again

[porridgelover]

Can you break down the tasks that are unpleasant (dressing, nappy, car seat) into steps and 1) identify the point where he goes from 'I dont like this' to 'I cant handle this' and then 2 ) reward him/give him time out to re-set his 'meter' in between steps.

For example, you've said he dislikes getting dressed. Could you do taking off pj top, then immediate reward. Pj bottom, then reward. And if he needs a time-out at that point, stop and give him some calming, before continuing?
Sorry if you've tried this already.

[kyz1981]

No That's a brilliant Idea- have done it in the past for baths but not for a long time, and have not tried it yet- but that might just work.

Thanks so much- it helps so much to get different ideas.

[kyz1981]

zzzz sometimes he will come running but yes only to certain noises- he tunes out human voices most of the time, they have never got a response using a human voice in all his hearing tests.

He is much better at home now- but still acts deaf when in different environments especially outdoors- you can not attract his attention with sound at all.

His first Pead was astounded when all his hearing tests (lots) came back fine. the only sounds he has always responded to is the hoover, mainly because he loves to cuddle it because of the vibration. but if you watched most of my videos back you would think he was deaf- he has never even woken to sound- it has got better but they think it is something to do with auditory discrimination/processing.

[kyz1981]

That's really interesting- DS has to see sound to hear it, he can respond to words if used in a set routine but this may be because of Visual cues.

We were convinced as was the NCDS that ds had Audio Neropathy as he did not even have a brain stem response by blinking to sound that made me jump 5 foot in the air but his ABR was normal- so that ruled that out and he began to count to 10 at 9 months.


However as he grew from about 18m he was clear cut ASD but with significant sensory issues that tend to prevent him from learning- (according to OT) he has motor planning difficulties and low tone in areas that they think he needs feedback to know where his body is- he does respond better to sound when laying on the floor.

It appears he has a good IQ but because he is a mimic, its really hard to tell what he understands and what he just copies.

He likes photos but if its a certain cup in the picture he has to have that cup or all hell breaks loose - so salt says to use picture Pecs- he has not got a clue what they are so still working on that as he will just give any plastic card to me as that what he thinks he is supposed to do.

He even waves with his palm facing his face as that's what he see's when people wave to him - he is like a little reflection.

I asked the SALT if his language development was typical for a child with ASD as I was concerned about a language disorder on top, but she says it's pretty typical of ASD- he speaks phrases so I know he hears words- if you say whats your name, he will say whats your name, but he can't process words in to meanings, he can learn them in a sequence but can't expand out and apply it to other situations, for example he will say" again" if I am twisting him upside down, but won't say "again" if he wants me to spin him again as it's not in that memory if it makes sense, I was Hello mummy for a long time now I am mummy pig- (peppa).

I like the idea of sound cues though as he loves sounds and may be easier to process than words.

I am going to try the listening program again - but now he is 2 he is supposed to wear headphones and I think i have a zero % chance of that working.

I think the hard thing for DS will be because he can copy phrases people think he can understand language much better than he can- I am not even sure he knows what no means yet.

[kyz1981]

Thats so interesting, Ds does not know colours or shapes but can count to 20, he often shouts random numbers out at nursery and used to count to twenty all the time as a kind of comfort/soothing thing- now he will just shout out "pip, pip onk onk" or "where is the ninky nonk going" whilst spinning or running in circles.

He had words at about 12 months, Mamma, up, and few others and lost them all and has never regained them, he also stopped babbaling at around 10 months- he oddly kept his numbers, and night garden words- he has always been very precise with how he forms his words which has suprised the salt as he has low tone around the mouth.

your son has made amazing progress, I can only dream that our DS will be able to do that- at the moment it just feels like every report brings up another issue or problem, but he is progressing in his own way.

we are just waiting for the final dx of ASD which should come at the end of the month, not really sure how he will develop his language, but the salt says as his memory gets bigger,they can work on making copied speech functional.

I may try numbering choices as it may hold his interest if nothing else. The SALT is sending me on a Mackaton course as well as PECS as DS will sing the whole of twinkle twinkle, incy wincy and other nursery rhymes by just watching sign- but I think its just copying again- but we will see.