I’ve been meaning to do this post for a while, but it is one of those posts that take time and thought, neither of which I’ve had much opportunity for lately. It’s about adult SID / SPD.
I’ve always had sensory issues, ever since I can remember, but it has only been through Adam’s SID diagnosis that I’ve come to realize what I have is (mild) SID and not just a case of Extreme Oddness. Although there is no denying I am Extremely Odd.
I’ve spoken about SID/SPD before (btw SPD is the new name for SID), but
Sensory integration is the ability to take in information through the senses of touch, movement, smell, taste, vision, and hearing, and to combine the resulting perceptions with prior information, memories, and knowledge already stored in the brain, in order to derive coherent meaning from processing the stimuli.
Sensory modulation refers to a complex central nervous system process by which neural messages that convey information about the intensity, frequency, duration, complexity, and novelty of sensory stimuli are adjusted. Behaviorally, this is manifested in the tendency to generate responses that are appropriately graded in relation to incoming sensations, neither underreacting nor overreacting to them.
Sensory integration disorders vary between individuals in their characteristics and intensity. Some people are so mildly afflicted, the disorder is barely noticeable, while others are so impaired they have trouble with daily functioning.
Children can be born hypersensitive or hyposensitive to varying degrees and may have trouble in one sensory modality, a few, or all of them. Hypersensitivity is also known as sensory defensiveness. Examples of hypersensitivity include feeling pain from clothing rubbing against skin, an inability to tolerate normal lighting in a room, a dislike of being touched (especially light touch) and discomfort when one looks directly into the eyes of another person.
Hyposensitivity is characterized by an unusually high tolerance for environmental stimuli. A child with hyposensitivity might appear restless and seek sensory stimulation.
My two sensory issues are touch and sound. And I’ve learnt to manage both as far as I can. Everyone in my family knows they are not allowed to whistle. It drives them crazy that they can’t whistle, but it is FAR worse for me when they do. It is like a knife cutting through me, and I am not exaggerating. As for the touch thing, that took a while, but I am finally at the point where I trust Marko not to touch me by surprise. Of course, I first had to break his ribs before he ‘got it’, but now he knows if he touches me by surprise again, he will have ruined my trust in him and we will be back to square one – in other words, I will constantly be on edge around him. I will be in a constant state of super heightened awareness, preparing myself for the next ‘attack’.
I recently attended a workshop on SID entitled “Sensory Intelligence”, run by a local expert in this field, Annemarie Lombard. The course was aimed at parents and educators of children with SID, and its aim was to give us adults a better understanding of what SID is, and what it is like to live with SID. I already knew what SID was and how it felt to live with SID, but I wanted Marko to attend the course. The whole SID thing is completely new to Marko, and he doesn’t really buy it. He thinks OT’s and others conveniently label children as having SID or ADHD etc when there is nothing wrong with them. He says they see things that aren’t there. So I wanted him to understand what it was like to live in this world. For Adam’s sake, and a little for mine.
It was a fascinating workshop. She started off by asking us whether any of us were sensory defensive and two of us put up our hands. She said she can always tell which of the women are sensory defensive by looking at them. Usually no make up (check), hair very short or tied back (check), non-fussy clothes (check) etc.
She then made each of us complete our own sensory profile, to understand where we fit on the sensory scale. Most people are around the average or ‘normal’ mark. Neither hyper or hypo sensitive. Some people are more or less sensitive in certain aspects (one of the 7 senses), but not at the extreme. Marko was dead centre. About as ‘normal’ as normal can be. I of course, was right at the extreme end of the scale for tactile and auditory. And fairly high on the others.
It was an interesting workshop, but when I left I felt a little um, disappointed I guess. I suppose I had unrealistic expectations. I wanted to leave there with a Quick Fix solution or 3 easy steps to make Adam’s life easier. Which of course, is impossible. However, what I didn’t realize at the time was how much I learnt about myself on the course. As time has gone by since the workshop, I’ve realized just how valuable it was. I’ve had some pretty interesting insights into myself that has helped me understand who I am, and how my sensory sensitivity affects my every day life. It is amazing actually. Although the two are linked, so much of what I was attributing to anxiety was actually sensory overload. By the end of the day, if I haven’t had time to ‘modulate’, I am like stretched rubber band, ready to snap. Now that I know why I feel that way, it makes it easier to deal with. A good night sleep always resets me. The sensory overloads of the day is like turning the (what’s that thing called? The turning thing at the back of a clock) thingy on a clock. You keep turning it and turning it and eventually it has to release. Or it will snap.
On the days that I’ve had a particularly bad time (lots of sensory overload), I lie in bed at night on hyper alert, like a raw nerve. Every sound is too loud; every movement by Marko sets me on edge. It’s damn hard to sleep like that. Now that I understand why it is happening, it doesn’t freak me out as much. If I am really bad then I just get up and sleep somewhere else for the night. I don’t try and fight it; I give myself permission to ‘reset’. And now I understand why it is so hard for Adam to sleep some nights, even when he seems so tired. Children don’t have the insight adults do, and so they will find it far harder to reset themselves. Of course, part of his therapy is to teach him the skills to do that. What is really interesting though, is how he has instinctively learnt a lot of that himself. His bedroom is always dark (to keep the heat out) and he often go to his room by himself to lie in his bed, or roll around in his duvet. A self-imposed time out. Clever boy. Now if he could just do that at night!
As I say, the workshop gave me so much insight into myself. It is always easier to manage something if you understand it. The physiology (is that the right word?) behind SID/SPD is interesting as well. It is interesting that both depression and anxiety, and SID/SPD come from the same part of the brain (limbic system I think). One thing that I’ve noticed with myself is that my SID gets worse if my anxiety gets worse. Now that my anxiety is under control, my sensory stuff is also a lot better. But you are still not allowed to whistle around me. Or hug me. Or shake my hand. Sorry. We can just wave from afar (quietly), if you don’t mind.
(BTW, my sister is convinced that I either had, or still have ADD as well. I think they are all interrelated. The SID/SPD/ADD/Anxiety. There is something that is not quite ‘usual’ up there. Thank goodness I am so naturally brilliant and incredibly good-looking, that one hardly notices the mental disability.)