A Personal Experience regarding Sensory Issues

I wanted to share   someone’s personal experience regarding sensory issues.

I asked her to write it for us what does she feel, or experiences when she has sensory issues. I think it is written  in books extensively, but only a person who experiences these problems can tell us what is really going on in a person’s mind, and body. So here it is  Sister Neelu’s personal experience, and how she is dealing with sensory overload/ sensory processing disorder. She  is following this blog since the beginning, and always have a very valuable input. May God bless you Neelu for giving us an insight into this troubling, often overlooked,  and misunderstood issue…ameen.

I like to ask anyone who had any struggles with sensory issues to please send your comments, so we can learn how these children/individuals feel, and how can we combat this disorder or just to make it easier  for them.

Well the first and most obvious thing I can think of is to try to make the home environment as safe as possible when it comes to these things. I personally think that a good place to start would be to make sure cleaning products are natural and safe (steam cleaning is particularly good) as a lot of cleaning products either contain strong chemicals, or strong perfumes to give the appearance that the product is “floral” or “lemon fresh” etc. This is true of products used to clean clothes as well, especially fabric softeners. I have sensitive skin so I have to use “non bio” cleaning products for my clothes.

Avoid air fresheners completely. I use a natural one with orange aromatherapy oil diluted in water and can cope with that though I know some people have worse sensitivities to the point that they can’t cope with any smell- even the smell of onions being fried or normal cooking. Those are the worst cases I know of and I realise some smells can’t be avoided, but the best place to start is to avoid the unnatural products that produce unnatural smells. For me, I find that I can tolerate the smell for maybe 5 mins even though I’m uncomfortable with it but after that I struggle to breathe and panic- then I need to leave the room where the smell is or maybe go outside (though I wont usually go outside cos’ it’s noisy in which case I’d be stuck and panic even more).

Noise sensitivity is the worst for me. Alhamdullilah I’m lucky to have quite considerate neighbours and we make sure the home enviroment is well controlled when it comes to noise. I switch the TV to ‘mute’ whenever commercial breaks come up cos’ they always increase the sound intensity on those. Sometimes certain types of background sound effects and music can upset me as well and then I have to mute the TV or miss part of the programme I wanted to see because of that sound.

Nowadays my parents record their favourite programmes and watch them when I’m not in the room because they get annoyed if I mute one of their programmes if a sound bothers me. Actually it’s not just the sound that bothers me… it’s too emotionally overwhelming sometimes. Like for example if the main character in that programme is crying and other characters say nasty things to her, I’ve developed a sort of emotionally fragile state in which I can’t filter out the fact that it’s only a TV show and they’re only acting- silly little scenes from trashy drama shows can really upset me for hours and get to me, which can be very draining so I often avoided shows that messed with my emotions too much. I also watch TV when they are not in the room (usually at night cos’ I tend to be awake at night) usually because my mum has a habit of talking when I’m trying to watch something and then I can neither listen to her properly nor watch the programme properly because each is a distraction from the other.

When I first developed noise sensitivity, I had to unplug the stereo next to my bed because when it was switched off in ‘standby’ mode, I could hear the sound of it on standby and couldn’t sleep. I also had to get rid of the clock (i had that clock and stereo by my bed for years without any problems before this symptom developed) because the little tick tick sound wouldn’t let me sleep. I’ve since put a much quieter clock next to my bed and that works better.

The worst noise for me is the sound of flies or bees buzzing. I can hear them sometimes when no one knows they are in the room cos’ my hearing is oversensitive… to the point that people think I’m being paranoid until I’m proved right when a fly emerges from behind the curtains or somewhere. I definitely couldn’t sleep through such a noise. That noise actually hurts and shakes me up quite badly- then lowers my mood for the next couple of days, so if I encounter that noise more than once in a day… things can become very unpleasant.

The closest example I can give to the reaction I have to this noise is to say it’s like an electric shock sensation. I had an electric shock by accident once when I was 12 years old and this sensation was very similar. When a fly buzzes past (the closer to my ear it is, the worse the feeling gets), it sends a sharp pain down my jaw and it feels like my brain is being vigorously shaken like a rattle from the inside. I’m guessing it’s similar to a seizure in that sense. After the noise has gone, sometimes I can hear the noise in my ear again a couple of times and get the same shock reaction- almost as if the noise has left an echo which takes a while to fade away.

Noise sensitivity is the most distressing of all my symptoms even though I don’t experience it that often because the home environment is usually well controlled and I don’t venture outdoors much where noise is harder to avoid (security alarms, construction/roadworks, motorbikes zooming past etc). Even so, whenever I sit in a room (even in hot summers) I keep the windows shut to keep out flies and keep out the traffic noise. My mum opens windows in other parts of the house and then closes them when I enter and my parents spent a lot of time last summer chasing flies cos’ I just couldn’t be in the same room as that noise. Initially they were irritated by it and expected me to get used to it, but it soon became obvious that that wouldn’t be possible.

I also can’t tolerate the vaccuum cleaner or the noise of the washing machine spin cycle (even though my mum is noise sensitive, particularly to electrical items but these sounds don’t bother her so I guess it’s a very individual thing). I can just about manage by staying upstairs when they vaccuum the downstairs area and vice versa but I had to learn an unusual trick for that.

Diffuse lighting and Diffuse sound:

A friend with a similar illness taught me about this. As I’m light sensitive, she told me that I need ‘diffuse lighting’ in the house. This means having a light source that kind of spreads light evenly around the room, rather than having spotlights or sharp rays of light surrounded by darkness. We do this by having halogen uplighters in most of the house and most have dimmer switches so that we can adjust them to a level that suits us.

Any lights that have a type of flicker to them are really bad for people with sensitivities, including people with autism. Some people can’t cope with fluorescent tube lighting but alhamdullilah I can. Having said that, I really hate those new spiral shaped ‘energy saver’ eco bulbs that are sweeping through the UK these days. I’m eager to find some alternatives as they really don’t suit me and make me feel anxious and jittery. Other types of flickering lights are a problem too, such as the flashing of cameras you see whenever a celebrity is on TV, especially on the red carpet or somewhere like that.

Anyway, I realised that just as diffuse lighting is a way of allowing my eyes to cope with a relatively normal level of light without distress, I also realised that to some extent, the same principle applies to sound. So for example the noise of a vaccum cleaner downstairs, or drilling next door would normally cause me distress, but I can put on loud music in the room (has to be very specific loud music without any background tinny noise or too much of a fast beat) and it makes that drilling noise sound quieter and more bearable. I realised that this was the case because I used to find my cellphone ringtone too loud, but then I went out to a busy train station and my phone rang but the sound didn’t bother me at all, so I realised the sound of people walking through a bustling station diffused the phone noise. Even so, I still cannot be in the same room as that vaccum cleaner or drill when the music is on because it can only go so far in diffusing the sound and it has to be done very carefully. I’ve heard some people with autism benefit from listening to ‘white noise’ on a radio- maybe because that diffuses other noise too.

My second cousin has aspergers and she wore earplugs the whole time that she was at my house so I presume she’s had problems with noise sensitivity too. Some people with these sensitivities benefit from ear defenders (the type that men wear when they dig up roads with a pneumatic drill) or others wear noise cancelling headphones. I find that these things have their uses, but are a mixed blessing. I also personally think that in some cases, prolonged use of such things can actually increase the sensitivity afterwards, though some people swear by them so it’s a very individual thing as to whether it helps someone or not.

Sorry this message is long, but I wasn’t sure how much detail you needed, or how much of this is relevant to your son’s situation. This message only gives a small glimpse of what it’s like- there’s so much more that can be said about this. For me it is THE biggest barrier in my relationships with people. Some of my friends have noisy little kids so I avoid seeing them because I cannot tolerate that noise. My brother has young kids who I avoid cos’ I can’t cope with that noise level even though they’re usually fairly well behaved- but kids will be kids. I had an awful experience a couple of years ago at a wedding when some naughty kids started popping balloons and I had to leave. I had to leave my cousin’s ‘mehndi’ (pre wedding party) because all the women wore too much perfume and I couldn’t cope… and the list goes on. It caused me to miss most of the family milestones; weddings, birthdays, family gatherings etc and distanced me from a number of friends cos’ I didn’t know where to begin to explain why I couldn’t visit them anymore. Let me know if you have any questions.

Neelu