An Update: Sensory Integration Disorder

I started my job three weeks ago. I'm working for a local theatre company, which is really cool. I'm on the production team as an intern. I love it, I get to work quietly all day with a small number of faces and it's not overwhelming at all. My boss thought it would be a good idea to put me on the wardrobe crew, but then realized it was too overwhelming for me, and that I would be better working behind the scenes. Typical aspie. It's cool though, I don't mind it. Realizing I can't work in an overwhelming environment is just one of the facets of discovering your personality and what you can do best, it's a part of life. I'm not upset. I'm just happy my boss was understanding and that I didn't have to pull out the "I have Asperger's" card. No, she doesn't know, but how is giving a label different from saying "I work well in quiet places" without the added misconceptions about a developmental difference?

I've been commuting into work every day by the train. It's an hour long train ride from where I live, since I'm living at home with my parents in the suburbs. Probably a good idea. The train is overwhelming, and it's long hours, but there are ways around it. I've been learning how to cope with sensory overload on the train- my iPod and earplugs are wonderful. I like having a snack with me as well.

Yesterday my neurologist diagnosed me with Sensory Integration Disorder- I'm tired all the time and cannot deal with loud noises. My family puts the TV too loud, they like to yell, fuzzy noises hurt me, and I get motion sickness very easily when in the car. I also went to Ikea a few weeks ago and had a meltdown. I don't like overwhelming settings. This is just the beginning...

Lately I've been avoiding loud places- I haven't gone to night clubs, or stayed out too long, as it's worse when I'm tired. I've essentially become a hermit. What will I do when there's another band I want to see? I'm usually able to push through concerts but I don't want to wear myself out since I'm suddenly becoming a lot more sensitive to these things.

My mom thought it would be a good idea for me to go on a swing, since I did that when I was a kid in OT, and it really helped a lot with the neurological connections in my brain. I tried that and found my body isn't built for childrens' swings (my hips are too wide). They're buying me a weighted blanket though, so hopefully that will help. I also got some new lightbulbs that are built to replicate daylight- my neurologist told me to turn them on in the morning so that I can properly wake up.

I've been doing my best to eat well and rest. I really do hope things get better. I'd like to actually have the energy to live and experience the world.

Anxiety + Voicemail: how I deal

Being a visual, socially anxious person, nothing makes me more tense than the need to check voice mail. Having my mom tell me, "Pink, did you get my message?" is WAY too stressful for me, almost as stressful as listening to voicemail itself.

Voicemail freaks me out because there is virtually no control behind it. You log into it through your phone, listen to painful beeping noises, and have no control over when the messages are shouted into your ear. The voice commands are stressful too, I hate having to wait to listen for which number to press. Furthermore, if a message is particularly sinister-sounding, it will give me a mini panic attack. Traditional voice mail removes all free will, and leaves you vulnerable to potential abuse being shouted at your ear.

Of course, I know most of the time it will not be abuse, but my ears need a break. This is why I'm so terrible at listening to voicemail. I tell everyone to text me because text messages are something I can handle - they're visual, silent, and can be opened at the viewer's discretion. Furthermore, text doesn't seem to pack as much of a punch as speech. Letters are just lines on a screen with meaning applied; speech, on the other hand, is created with sound waves resonating from an individual's vocal cords, with varying degrees of intensity. Text can also be intense, but the intensity can be controlled, while the intensity of another person's speech is out of your control.

As you can tell, the anxiety really gets to me here. I already spend more time around people than I can emotionally handle, having to put on a friendly face all day. I can deal, but just barely. This overstimulation causes me to retreat into my room 2/3 of the time (yes, I did the math there), attempting to recover from the long day. I can only handle so much unexpected stress. What to do?

Well, I can't take the voice out of voicemail, so I did something to gain a little control: I got YouMail. Youmail is a program which replaces your default voice mailbox on your phone. Not only does it have more storage space than a traditional voicemail system, but you can view your messages in an inbox-like setting online. It tells you who called when, and you can play the message as a clip at your own will. You can also organize and delete messages much like e-mail. How cool is that?!

In addition, I also set it up so it will text me when I get a voicemail, telling me who called and when. This removes another stressor from voice mail: I never know when people call and am always confused. This feature helps eliminate that issue. I also have an app to check it on my iPod touch when there's wireless - the messages show up in a visual setting there. It's way awesome, and while this doesn't alleviate all my anxiety, it's definitely a relief.

Of course, there are other features (personalized greetings, blocking callers, sharing messages online) but I don't care much about those. The only thing I care about is the fact that YouMail helps me feel more in control of a communication tool that NT's take for granted, and expect everyone else to take for granted as well.

As you can tell, I'm absolutely ecstatic about this program. While free speech-to-text would be ideal, I'm not paying shit for that. So this is the next best thing, right?

Kickboxing = Death Sentence

Today I tried kickboxing. My friend encouraged me to join her, since it's an exercise class that she loves... Let's just say I lack the coordination for it. It's too fast for me, and mid-air punching to the sound of a dude belching over Lady Gaga songs isn't my cup of tea.

Perhaps this is because I'd never done it before, but it was too fast - I spent half the time watching the instructor and standing there like some idiot. Plus, the moves come up too fast, and I have NO CLUE what I am supposed to expect. Granted, we did end up doing some yoga moves at the end, but the bouncing techno prevented me from truly relaxing.

My neurologist first encouraged me to start exercising again to ease my headaches and exhaustion, because he said I wouldn't feel any better unless I try it. I'm pretty content doing yoga or some sort of meditative exercise, like running, because it can be done more or less at your own pace. While this isn't the case with yoga, it is so slow that I have no trouble keeping up. It also helps me with my anxiety.

Kickboxing, on the other hand, is like asking for a panic attack. My brain gets overloaded so easily that the hyperactive remixes of radio songs aren't exactly helping me. I'll admit that it was a good workout, but I don't think I'll be going back. It's too much for me, and I'm just not cut out for it.

Aspies, what do you like to do for exercise?

Aspies and Cats

My cat does this thing when he's happy where he'll curl his front paws in and out. It reminds me of a stimming thing, as I do this with my toes too.

He also is very sensitive to noise. He'll run away when my mom drops something on accident, and if I stomp too loudly. He's afraid of the dishwasher, as well as my guitar. If he hears something noisy, he'll run away in panic.

He's terrified of new people. The only people he lets close to him are my immediate family and a few quiet, gentle friends. With us he is very loving and affectionate, but if we ever have a lot of people over, he'll hide, shaking under my mom's bed.

His motor skills aren't very good, either - he can't run in a small circle - he can only run in large, clumsy ones. He is constantly invading my other cat's personal space as well - he's socially awkward, like me.

My kitty and I have a lot in common. Sometimes I wonder if he's an aspie too.

Whether he is or not, though, we make a good team, and I'm happy to have someone in my life as eccentric as I am (even if he's a cat).

Sensory Issues and Well-Being

Hi, I'm back... sorry I disappear every now and then. I just wanted to update you on how I'm doing.

Over my winter break from college, my mom took me to see her neurologist, since I've been having daily headaches for as long as I can remember. He prescribed to me an old anti-depressant that also helps with pain prevention. It's been about a month since I've been on it, and I've got to say, I feel a lot better. I didn't understand for a while that most people don't have to grapple with headaches on a daily basis.

Due to my recently being able to take on a lot more, I'm better able to recognize what things trigger the headaches that do occur - like not getting enough sleep. I've discovered that I need somewhere between 9-10 hours of sleep a night to feel decent. Being a full-time college student, those full nights of sleep get increasingly hard to come by. Even though I'll feel like a slug, I have to keep working - my grades and my self-respect depend on it. Even if it makes me feel like shit. I'd probably be able to get more work done if I were on a proper sleep schedule, haha. It's a tough balance to adjust to. Either way, I'll try my best.

I often wonder though, if my perception of headaches is merely my observing the presence of my head? Like feeling it's there. It still feels heavy and sluggish, as it sits there above my shoulders. It's not a sharp pain, it's very dull... possibly even a byproduct of my brain communicating with the rest of my body. Is the connection between my brain and my body somewhat defunct, in that the normal setting it's stuck on is "headache mode"??

I do, however, think the Aspies having low muscle tone generalization is true for me. Though physically fit, I often feel like a ragdoll, very limp and weak. I have poor posture as well, and a lot of the time just want to sleep. I guess I'm fortunate that my schoolwork requires making things, a lot of which involves standing up and moving around. It's important that I'm active in order to feel my best. Those moments, though, when I need to sit down... I think they send a signal for my brain that it's bedtime. This is why I have the hardest time in lectures, because despite my desire to learn, I'm not really doing anything interesting, just sitting there listening. I wish educators would create a more interactive version of the lecture, because I know for a fact that I'm not the only one who has this problem. I guess I'm fortunate that my professor lets us eat in class!

I'm trying to find foods and certain activities that help combat sluggishness associated with tiredness and being stuck in a zombie-like mode (which I often find myself trapped in). When I feel better I find that it is easier to socialize and get work done, and it is far more enjoyable - I feel almost normal, to the extent that one would like to feel "normal".

I've found, for myself, that peppermint tea, white tea and orange juice work wonders (citrusy things in general), as well as eating foods rich in protein. I think soy is a wonder food. I love sugar, but the crash that comes afterwards may not even be worth it. Doing yoga also seems like a great thing for me to do, as well as frequent exercise. I still need to work my way to a happy equilibrium, though, because I'm not quite there yet.

I want to bring this question to all of you: What have some things been that help YOU with sluggishness?

Journal Excerpt 2/26/08

"...It would be so much easier if you could have ear plugs for your sense of touch. They obviously wouldn't go in your ears, but if you could somehow adjust how you physically feel when you are being touched then it would make life a whole lot easier. I would take advantage of such an opportunity in a heartbeat.

Unfortunately, such an idea is impossible. It is up to me alone to control such things. I hope it gets easier over time."

Sensory Issues

Inspired by a post written by a new blogger, A, I've decided to touch upon what the experience of Asperger's is for me. I rant and rave so much about the subject that a lot of you probably don't know where I'm coming from... Therefore, I'm going to discuss how many of the issues associated with Asperger's Syndrome affects me. Maybe someone will gain some insight on this, from their own experiences? I hope!

So, about sensory problems. I've had a ton of these growing up. I remember I used to hate tags on clothing, and will usually wear soft cottons. I don't like wearing wool - I have a wool sweater that itches mercilessly through any long-sleeve shirt I put underneath and, hence, never wear. I don't like stiff pants or dress pants - I usually only wear soft, broken in jeans or dresses. I ADORE sweatpants but I still try to look put-together if I wear them. I love the way dress pants look though, so maybe this will change. 

I remember violently protesting when my mom trained me to shower instead of taking a bath. I believe I was about six or seven, and the water getting in my face, shampoo falling in my eyes was too much to handle. I would scream my lungs off whenever she made me shower, and would refuse to for days at a time. I've since learned to shower everyday, but it is still an uncomfortable experience in ways. The water hitting me overhead is so overwhelming that my actions in the shower are usually dragged out... They're never longer than 20 minutes, but I'm still finding ways to adjust.

One big problem I've always had has to do with loud empty noises: I can't STAND them. These include things like the vacuum, which I have to operate myself to be able to tolerate, the sound of traffic outside, grasshoppers chirping in the summer while I'm trying to sleep (hence, I can't sleep with the window open), TV static, the microwave, even the soft fuzzy noise my computer is giving off right now.... you get what I'm saying. If the sound is directed in any way, like music or television, then it's fine (even live music is perfectly fine), but those sounds that aren't meant to be made really bother me. It just feels like giant obstructions are filling my ears and jumbling around my thoughts. If one of these sounds are going, I can't function, to put it bluntly. This is one of my biggest sensory problems.

Another problem I have extends into the social realm of things: I'm very tacitly sensitive, so I can't handle being tickled. Even the slightest of human contact gives off a tickle. I'm fine with hugs and all that, but if someone touches a certain part of my arm, or tries to pat my shoulder, I can't help but giggle a little, and I'll get furious at my friends if they intentionally try to tickle me.  I'm tickled even if somebody shifts around where my shirt lies on my back... Also, being intimate with someone is usually a pleasant experience (granted, if he's a good kisser), but in my brain, intimate touching reads as tickling, and it can get frustrating for the other person involved. It's obviously something I need to get used to, so I hope I'm able to over time.

Also, my own personal well-being can cause sensory problems. Headaches and exhaustion feel like the end of the world. If I've had five hours of sleep, it will feel like I haven't had any, and I'll need plenty of caffeine and vitamins in order to function. I guess my body shows more easily when I'm not at the peak of my health. I don't know how much this reaches into the realm of sensory issues but I thought it was relevant nonetheless, and I'm wondering if anyone else experiences the same thing?

On another note, I love heavy-feeling things. I enjoy wearing many layers of clothing and giant, thick blankets when I sleep. I've read that this has to do with Asperger's in that some of those who have it like to apply pressure in order to relax. Part of this is why weighted blankets are so successful for many people (you can read more about this here). If you're interested in buying a weighted blanket, then there are many places available online.

I hope this post has helped some people gain insight on either themselves or their loved ones. As always, please share your own sensory experiences, or anything you'd like to say at all. Peace!