On being an adult with sensory processing disorder

Imagine if:

• You could see obstacles in your way, but you could not make your body move the direction you wanted it to, to avoid them.
• Your clothes felt like they were made of fiberglass.
• You tried to drink a cup of water from a paper cup, only you couldn’t tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn’t squeeze it hard enough and it fell right through your hands and onto the floor.
• Every time you tried to write with your pencil, it broke because you pushed too hard.
• The different smells in this room made you utterly nauseous.
• The humming of the lights sounded louder than my voice.
• You couldn’t focus your eyes on me because everything and everyone in the room catches your attention and at the same rate
• The lights are so bright you have to squint, then you get a pounding headache half way through the presentation
• Sometimes when people touch you, you feel nothing at all. You itch, and your scratching leaves a bruise.
• You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.
• People’s whispers sounded like they were yelling.
• You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it. Or you read words, but you have to read it 5 times to get the meaning of the word and remember it every time.
• You had to pull the car over 3 times on the ride somewhere because the motion makes you sick.

Sensory processing disorders affect children and adults differently. For some it affects maybe 1 or 2 senses. For others it affects them all. Some people are hypersensative (feel too much) and some are hyposensative (feel too little). If sensory processing disorders are found before the age of 7, they can be best treated because the nervous system is malleable. After that, the challenge increases greatly.

I’m not sure what causes SPD, but it has to do with neuropathways in the brain. People with SPD can not effectively process or interpret sensory input.The senses give information to the brain and the brain processes the information which tells us what’s going on around us so we can interact efficiently with others and our environment. With SPD, the information may not be accurate or reliable! As a person that has sensory processing issues, this creates a whole host of challenges, personally and socially.

Stanley Greenspan, the author of The Challenging Child: Understanding, Raising, and Enjoying the Five “Difficult” Types of Children has an insightful analogy to help us understand what people experience:

“Imagine driving a car that isn’t working well. When you step on the gas the car sometimes lurches forward and sometimes doesn’t respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else.” It’s no wonder people with sensory processing disorders feel out of control, exhibit a whole host of behaviors, and have difficulty concentrating and focusing.

I happen to be one of those lucky people to whom it SPD affects most every sense. As a kid, it wasn’t easy living with SPD, I didn’t know I had it, not until more recently.  I didn’t know I was different in a lot of ways earlier on. But I was a fearful and skittish child as a result of it, even before significant trauma was a part of my life. I went on to get two (almost 3) college degrees, participate in meaningful activity, sports, relationships, and community involvement. But I felt different. I worked harder at things that none of my peers needed to ( like reading and memorizing). I was good at almost everything from trying so hard to fit in, but never was great at anything. I was exhausted all the time. I would end up in the hospital every few months when typically others would have sensed how sick they were getting. I felt nothing when someone would hug me (I need pressured hugs) and I didn’t understand.

To sum it up, I have hypersensitivities regarding hearing, light, smell/taste/texture, and cold. On the other side, I’m overly tolerant to heat, pain, and touch.

This means that:

• In a room filled with inconsistent noises I hear everything at the similar volume, which distorts my ability to focus and remember what’s being said to me. Sometimes if there’s too much noise going on I have to fight the urge not to crawl in a corner and curl up with my hands over my ears… this is NOT socially acceptable for an adult. But it physically hurts me. It’s hard for me to go to crowded and loud places. An unexpected noice can send me disproportionately jumping.
• I have sensitivities to touch and texture, for example, I can’t wear jewelry that touches near my wrist (think Alex and Ani), or is around my neckline (I’ll gag). Nail polish on my finger nails or dirt under my nails irritates me. Certain foods I cannot stomach, because the texture of the food will make me sick immediately as I try to eat it politely (green beans, ground meat). Somedays I can tolerate more food textures than other days. Some textures I’ve never been able to eat. This has been really difficult for me, especially because there’s food allergies mixed in. I like to touch things a lot to remember them.
• 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 and I see stars everyday. I can hear white noise of lights and other technologies long after others ears quickly adjust.
• Highly sensitive to smell, good or bad. Either way it can affect me. Smell is my strongest sense. For better or worse. I’ve had to have distance in some relationships because certain smells of another person was so hard for me. I also remember a lot by smells and it affects my ability to eat. Sometimes the smell of certain foods is enough to make me throw up and other times I can’t think of anything else until I have that food.
• I am hyposensitive to weather. I can wear sweaters and sweatshirts in the summer and flip flops during a snow storm. My body does eventually catch up and in nearly all “extreme” weather, I develop fevers that require a hot shower and rest to correct and “reboot” my system. My blood pressure is always low and wavers to dangerously low weekly. I have a terrible auto-body regulator.
• Being hyposensitive to pain is terrible 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, because I have a tendency to ignore pain. This ignorance of pain has landed me in the hospital near dying before. Not a great thing overall and not a choice I make. And when my body does catch up to the pain, it is over the top, as if the pain came out of no where even though the condition has been going on for a while. So I try to say I am acutely sensitive to pain, with a high threshold.
• Visually, I have what’s called double vision and I sense light through my closed eyelids acutely. It also takes me 3 times longer to read than others (which I’ve always known). I was taught how to predict words using the first 3 letters when I was younger by a teacher who felt bad for me. I know how to use words, but not what they mean often. I can see words in my head but not be able to get them out. Sometimes I can read a word and not be able to say it immediately, especially when overstimulated.

This whole Sensory Processing thing has been difficult for me. I have real neuro issues and this complicates it even more. It’s hard to separate out what caused it, trauma, genetics, upbringing, etc. I haven’t figured out how to explain it to others, so I haven’t mentioned it much. It’s hard to not feel understood. It’s harder when you’re not able to answer others questions or help them understand and know you. It’s hard because it fluctuates. When I’m overstimulated, even a trip to the grocery store is too much, and could be, for days.

Imagine being in constant fight or flight mode, as if you will be attacked. That’s what Sensory Processing Disorders do. Your brain literally can’t handle the sensory input. It’s overwhelmed. The neuro synapsis and pathways function differently. I understand why it’s happening now, why I want to have a fit and shut down often. But even now that I understand it some, it’s still frightening. And it’s another notch on my “I’m different” belt. My body literally shuts down when I’m over stimulated. Pain in my ears and pressure in my head forces me to lay down and shut my eyes. I become unable to hear much and my vision becomes very blurry.

So what are the solutions? Well, everyone is different. I need a lot of quiet time, but not silence. Silence=white noise and white noise is TERRIBLE. I use sunglasses for sensitivities to light. I wear them inside sometimes, in the grocery store, at church, and at night (headlights and snow blind me often). I stay away from mirrors and stagnant water. Reflecting light hurts. We try not to put on overhead lights in our house. I’ve found warm showers help to readjust my body temperature during changing seasons or a trip to the beach. I have ongoing nausea from other chronic health issues, so I’m on near constant nausea medicine which helps with motion and smell sensitivity, but strong scents still hurt my nose. I try not to go anywhere that has loud music and too many movements or moving people. My bible study group keeps the worship music low so I can participate. I don’t wear clothings that touches my neck line. I hope for strong hugs so I can feel them, and I try to pay attention to bruises and ANY skin markings or even subtle health changes daily. I take my temperature every couple of nights. All in all, I’ve just had to find solutions to minimize that flight or flight anxiety mode. I really thrive on close connection, a period of quality time with someone else, that’s slow and allows me to get out what I want to say and receive care and love and touch in such an environment that’s not overstimulating. It’s rare to have that, rare to find it. Rare to be given it.

I don’t like knowing I’m different. I don’t like that I have so many starkly different life experiences from others. I didn’t choose this, any of it, and that’s hard. It’s hard not having cut and clean diagnoses that are definitively from “this” or because of “that”. It’s probably likely trauma, genetics, and nurture played a role together. It’s hard because I can’t explain to others as I could explain how I received a broken leg. But I’m finding ways I fit in the world, even if it’s not the life I hoped for. I understand kids and adults with ADHD. I handle melt downs of kids far better than most of my friends. I’m able to hold it together until I am alone enough to cry. I perceive things in others. I notice a lot. I’m sensitive and compassionate.

I have no permanent solutions to resolve any of my medical issues yet. But I have a lot of partial solutions, and partial solutions are solutions I can work with!