Saturday 12 September 2009

The Senses: SIGHT

I lie in my green animal bed looking up at the light. If I squeeze my eyes closed and then just open them a tiny, tiny bit, I can make the light go all fuzzy. I always do this with lights, just to test them out!

And I love light-switches! I turn them on, off, on, off. Whenever I go somewhere new, I always have to find the light-switches to see what they do!

But I do NOT like those square noisy lights - the ones that hurt my eyes and make that buzzing noise that hurts my ears. There is one of those at church and it makes me cry if it is on - I run as fast as I can and turn it OFF!


All around me are lines that go up-and-down, like door frames, lamp-posts, fences and railings. When I have to walk past up-and-down lines that are close together, like railings, I sometimes get dizzy and upset. I jump and cry and flap my arms, and lie down on the ground and close my eyes tight so I can't see those lines. Sometimes I can't even get through a doorway because those up-and-down lines of the doorframe are going to catch me. I have to close my eyes and try to squeeze through as fast as I can, but sometimes I get so upset and frightened that I just can't do it.


I do like looking at lights on the ceiling, but some ceilings are way too high and they frighten me, especially GLASS ones! Like the big glass ceiling at Bluewater... I look up at it and feel dizzy - I think I am going to fall up, up, up into all that space. And when the sky is dark outside, I look up at that glass ceiling and I see my reflection, tiny, tiny and upside down, and I just KNOW I'm going to fall upwards. I hold on tight to Mummy's hand and close my eyes and crouch down in my purple chair until I feel safe again.


Zac's visual perception problems are part of his Sensory Processing Disorder, and affect him differently at different times. At it's worst, the problem makes simple things like going through a doorway almost impossible for Zac, and vertical lines, like railings, can cause him real distress if he has to walk past them. It's quite hard to understand why it is so difficult for Zac, but we have to accept that he just doesn't perceive his environment in the same way that we "neurotypical" people do. Fortunately he is OK with doorways at the moment!

The vertical line problem started when Zac was about 3 years old and made going out and about very difficult. That's when we first discovered that Zac felt much safer when in a chair, but he was too big for a pushchair. Zac was referred to the wheelchair service and was first given a Maclaren Major Buggy (a huge pushchair for children with special needs), and when he grew out of that he was measured up for a proper wheelchair, which he calls his "purple chair" (as the framework is purple).

Many people find it hard to understand why Zac, who is physically mobile, needs a wheelchair. But Sensory Processing Disorder, which affects many autistic people in varying degrees, can be extremely debilitating and, in Zac's case, is at the severe end of the spectrum (like his autism). His wheelchair provides a safe haven for him when out and about and enables him to cope with the onslaught of environmental stimulus which his brain finds so difficult to process.

Zac has been facinated by lights since he was a baby, and loves to switch them on and off, enjoying the whole cause-and-effect process. But his SPD does cause him to have "hypervision" with regard to lights and it is almost as if he can perceive some frequency of light (and sound) that the rest of us can't. The "square noisy lights" referred to above are the big halogen ones you often find in large buildings, and do cause him some discomfort. I'm convinced that they also emit some kind of sound frequency that he can hear as they seem to hurt his ears too. Again, his sensitivity to these can be worse at some times than others, and at the moment he is not too badly affected.

The fear Zac has of high glass ceilings is still very much a problem however, and he seems to have real difficulty with depth perception. He suffers from some kind of vertigo when looking up at these ceilings and clings on to us, terrified that he is somehow going to fall UP! I believe it is similar to the feeling you get when swinging on a swing and looking right up towards the sky - try it, and you will have some idea of how Zac feels!

We do hope that Zac will be less affected by his SPD as he gets older, as the world can be such a frightening and distressing place for him at the moment. As always our two aims for Zac are to keep him SAFE and HAPPY!

Key:
WHITE text is me, "speaking" as Zac
GREEN text is direct quotes from Zac
GREY text is background commentary or explanation



1 comment:

  1. WOW. you have NO IDEA how much Zac sounds like a younger version of me. After researching SPD online after reading this, it sounds almost like I may not be as f****kd up as I think I am, and could just suffer from the above & extreme misdiagnosis. 87 birthdate here, and I, like Zac, used to freak about things in certain formations (more diagonical/cross lines for me) but was thrown in the bucket for 'OCD (obcessive compulsive disorder).... misbehavior as school was labeled as ADD/ADHD. I also hated walking. I broke the buggy I got so big. i HATED, HATED, and still HATE walking. I wanted a wheelchair so bad when I was a kid... and believe me, I knew the consequences. Being in my mid 20s and seeming to suffer everything in the book stated for SPD & trying to hide it (which i just researched SPD and I fit in it like a glove....) I wonder if maybe the reasons I STILL am obsessed with wheelchairs is more of a SPD thing (i remember feeling like my body inputs would just 'JAM' in the off or on position). Like Zac, i see a wheelchair as a security blanket, but maybe I'm just a 20-something freak of nature. Could you tell me more about Zac and how the chair relates/works for him plz? As awkward as this sounds, (i know im only focusing on one area really here...) but it's like reading about Zac is reading about ME as an early kid except he's got a loving mother who isn't in denial and actually is capable/caring enough to do the hard work and research to care for him on multiple fronts.

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