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What is it like to have a Sensory Processing/Integration Disorder? (Reblogged)

February 6, 2013
 Lately, I’ve had a lot of parents ask me what exactly is it like to have a Sensory Processing Disorder (SPD), and why it causes tantrums/meltdowns. So I’ve decided to write a post directed at trying to explain what my SPD is like, what it was like when I was a child, and how I reacted when I became overstimulated by the senses.

First, I have to say that SPD occurs in people with ADHD and others as well, who don’t have an autism spectrum disorder. So it’s not something that’s a definite part of autism, from what I understand, but more often than not, at least a few senses are affected.

I happen to be one of those lucky people to whom it affects every sense. What do I mean by SPD? Well, it’s when a person’s senses are either hyper (over) sensitive or hypo (under) sensitive. In some people it’s just one thing, like hearing, in others, it’s everything. I can tell you that as a kid, it wasn’t easy living with SPD, I didn’t know I had it, or that I was any different than anyone else either. But I was a fearful and skittish child as a result of it.

So SPD affects all my senses. To sum it up, I have hypersensitivities regarding hearing, touch, light, smell, and cold. On the other side, I’m overly tolerant to heat & burns, pain, and I have poor vision.

This means that 1) In a room filled with inconsistent noises I hear everything at the same volume, which distorts my ability to understand what’s being said to me. That’s where the Auditory Processing Disorder comes in. But that’s a whole different thing entirely. 2) I have sensitivities to touch and texture, for example, I can’t wear jewelry, as it scratches up against my skin. Clothing irritates me, I cannot sleep unless I’m au naturel because all the twisting and bunching of the clothes drives me insane. Even certain foods I cannot even stomach, because the texture of the food will make me sick immediately as I try to eat it politely. 3) I’m very sensitive to light, especially flourescent light, and I can easily be blinded by the sun at the beach or over the snow. With light bulbs, they literally hurt my eyes. They also irritate me to no end with their flickering and humming. 4) Smell. Highly sensitive to smell, good or bad. Either way it can affect me negatively. 5) Tolerance to heat is something that is good in hot weather. Actually if it isn’t 80F, I’m not warm enough. You will see me shiver and turn blue in weather below 80F, this goes for water temperature as well. This is where the oversensitivity to cold comes in. It’s 71F in my home right now, which is damn chilly for me. 6) Pain. Being hyposensitive to pain is a pain in the ass actually, since I have chronic pain conditions. When the doctor asks me to rate my scale of pain, I have to estimate going by what I think other people would say, cause I have a tendency to ignore pain. This ignorance of pain has landed me in the hospital dying before. Not a great thing overall. It’s something I tell Aspie/Autie moms to look out for in case there is a health problem that a child seems to not notice, especially as they hit their teen years. 7) Poor vision – self-explanatory. I had laser vision done to correct it a few years ago.

So where do I start? Say I’m sitting in my home alone, typing my blog. There is a distracting slew of noises surrounding me, the cars buzzing down the nearest highway, the industrial building nearby sawing or whatever all that chaos is, trash trucks up and down the streets, a ticking clock, several snoring cats and a squirrel on the roof. The TV is off, but I can still hear (and feel on my skin) the current of electricity powering all that equipment. Most people wouldn’t notice these things and they would be able to concentrate on their writing. Not me – each little noise hits me at the same volume, intermittently and unpredictably. This is distracting by itself, but when you factor in the unpredictability of the sounds, you then get anxiety, which automatically turns on the fight or flight mode. As a kid, this would have been a sensory overload, and a meltdown. I didn’t tantrum, I was too quiet of a kid to be loud. Instead, I would begin to cry uncontrollably, unable to speak, voice chords frozen in fear of what I didn’t understand. Now let’s add a little touch sensitivity. I put on, or say mom put on me, a thick turtleneck sweater. Imagine the terror of feeling like you’re being strangled to death. Not good. That’s enough to cause a meltdown by itself. Let’s add light sensitivity. A classroom, with row after row of tubular fluorescent lighting, the room lit like a fantastic Christmas display. Bright and blinding, but not only that, the humming and flickering of the light is just one more thing to distract me. One more thing to pile on the overload. Let’s say the room was just recently cleaned, using bleach. While no one else notices it, I’m literally choking and gagging trying to breath and then wham! asthma attack. Ok, what else can I overload myself with? The cold. School was always a nightmare for me, as the temps in the winter were barely enough to sustain my body warmth. Without a coat, there would be a blue, shivering girl in class who can’t pay attention to the instructor because I would slowly be freezing to death. I think this is a good representation of what a child might encounter in the classroom, and demonstrates how easily our fragile sensory systems can be overloaded.

So what are the solutions? Well, everyone is different, but I’ll share some of the things that I have found work for me. When it comes to noisy, inconsistent distractions, my savior is music, loud enough to drown out all of the other noises. In fact, that is the only way I write, with loud music or listening to my ipod. The ipod comes in handy at other times as well. You’ve got to find something that will give your child some comfort and a break from that onslaught on the hearing and everything else. Imagine being in constant fight or flight mode, as if at any moment you’re going to be attacked by something. It really isn’t fun, and a child doesn’t understand why it’s happening, so it becomes even more frightening.

For sensitivities to light, sunglasses are the answer. I wear them anywhere I need them, at night when the headlights are blinding me, in giant overlit retail stores. I also made it a point to get rid of all the CFLs in my house and use bulbs that are more Aspie friendly.

The cold sensitivity? I always wore my coat to school, and when I was sent to the principal’s office and told to remove it, I declined. And when my dad found out, he drove up to the school and gave that principal a piece of his mind. No one ever asked me to remove my coat ever again. I love my dad! I’m told that most people on the spectrum are insensitive to cold, so they’re the opposite of me, and may be bothered by heat instead.

All of these things point to finding out just what your child’s sensitivities are, and then working to find solutions that will minimize that fight or flight anxiety mode. Typically, someone sensitive to touch prefers soft fabrics, tags removed, seams that aren’t irritating to skin. No turtlenecks or scratchy wool please!

What is a Sensory Processing Disorder and what causes it? I don’t know what causes it, and I’m sure there are a ton of theories about how it develops. My understanding is that it’s a difference in how our brains are wired, compared to the non-SPD population. I like to say I’m “creatively wired.” I hope this post has helped some of the parents out there to understand their children better, and how they can work to find solutions that will decrease the overload, and hopefully, the meltdowns. I’m always here to answer questions for anyone. For more information on SPD, please refer to http://www.sinetwork.org/about-sensory-processing-disorder.html.

~ Namaste

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