Cleanliness and Sensory Meltdowns

I need cleanliness, at least in some form. Dirt, dust, small particles, grime, anything that feels grainy or slimy makes me feel uncomfortable. When I cook, I wash my hands every chance I get because I can’t stand the feeling of my hands being wet or dirty. The feel or sound of stepping on crumbs is literally painful. Even the smell of dust can cause sensory discomfort. I can’t relax when I see potential sensory problems. I know until I feel comfortable in my environment, I will be irritable and on edge.

Going back home was really hard for me. It probably seems like I’m always cleaning when I go visit my family. I sweep the house and wipe off the counters and do the dishes. The thing is, everyone expects me to participate and have fun, but all I feel is discomfort. I feel trapped by the dirtiness around me. Everything isn’t excessively dirty, but there are lots of little things that aren’t taken care of. I see dust everywhere and the floor needs to be swept and vacuumed before I can relax.

My family doesn’t understand it. They just see a jerk who gets upset with everyone for no reason. The truth is, I’m dying inside. I want to run away and breakdown in tears because I can’t handle the sensory pressures. It’s too much for me. I get anxious and feel like I’m suffocating. And I hate it. I hate myself. I hate that I yell at everyone and get overwhelmed. It also doesn’t help that I’m usually around more people and little kids so the sensory pressures are even more prevalent.

Perhaps the most interesting thing about all of this is I don’t actually have to touch anything for it to be uncomfortable. Just the thought of touching it makes me anxious. That’s not to say I keep everything in my life immaculate, but things are clean. I don’t leave anything where I could step on it or touch it and get dirty. I keep things organized and avoid allowing things to pile up.

I worry about things not being clean. I worry about being too busy to clean. I worry that I will become a monster, a jerk, unbearable because I can’t handle the pressure. One of my biggest fears is exploding at someone I love because I’m stressed about my environment. And it happens more often than I want to admit.
I wish I could explain that it’s not the person. I don’t get angry with people. I get frustrated by situations and take out that frustration on people.

I wish I could tell them I love them and I’m sorry for how I’m acting because I know it’s ridiculous. I can sometimes explain this later if I can find the words, but during the situation I am an uncontrollable mess. I hate how I’m acting and who I am but I don’t always see a way to escape. And if there’s no escape, the only way to cope is to blow up or break down.

And I hate it and I hate myself, which only makes it worse because I know I’m ridiculous but it’s hard not to be. It’s hard to keep the pain inside instead, to feel my insides churn, my skin feels like it’s holding in a million tiny armies trying to march out of me and the pressure builds in my head until I get a headache and collapse from the strain of it all.

This is what a sensory meltdown feels like. You try so hard to handle everything that causes you pain until you can’t take the pain anymore. You try to act normal and like things don’t bother you, but they build just under the surface until the pain and discomfort is too much. You try to escape if you can, to find a place to let go where you won’t hurt anyone, but you can’t always escape. Sometimes people won’t let you or you can’t get out of the store fast enough or there’s no where to go.

And then you become someone you hate and that everyone else probably hates too, and you break because it will never be enough. You can never hold it all in. But you try again the next time and the next time, and you just pray that you can keep the monster inside yourself away from everyone else.

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

Want to join in on next month’s Sensory Blog Hop? Click here!

Holiday Meltdowns

I love the holidays and spending time with my family, but sometimes holidays bring out the worst in me. Holidays are the perfect storm for a sensory overload. There’s an extraordinary amount of people around, which means more noise, messiness, and general sensory experiences.

Everyday noise is usually manageable because I have learned to cope with it. Sometimes it becomes stressful and I need to be alone for a while, but usually I can handle life pretty well despite all the noise. During the holidays though, I feel stressed all the time. There’s noise and people and lights and something going on all the time. I feel like I’m in a tornado of constant motion and the noise swirls around me suffocating me, agitating like a blender grinding ice.

This constant commotion of emotions and sensory overload has led to some meltdowns this holiday season. Unfortunately, my family has been the recipient of my inability to handle everything. Luckily, I have been better this year than in the past. Still, I have been frustrated by my meltdowns or explosions of emotions.

I just hope that people are understanding. I hope that if you have a family member or friend with autism or sensory issues, that you understand that the holidays are harder for us. We try to participate and be kind and hold ourselves together, but if we break or snap, please understand that it’s not you. I promise we’re trying. I promise I’m trying. It’s just a lot to handle with so much going on.

Silence

Sometimes you have to stay silent to keep from screaming.

Sorry for the lack of posts lately. I have been switching between feeling depressed and lethargic to feeling somewhat hopeful, but for the most part I have just wanted to disappear.  I need a break from life. Luckily that break should come fairly soon. I am taking a week off of work and going back home. Hopefully it will be the break I need and I will be able to return to work without all this frustration I have inside right now.

Lately all that is coming out is poems of frustration or hopelessness. Inside of me feels like explosions of emotions that don’t fit in with my life. And I have no way of expressing those feelings without feeling like I am going completely insane. So, I am going to take some time off and just disappear from all normal activities for a while. Hopefully when I get back the darkness inside will have found an escape or at least will be quenched for a little while longer.

It’s All About Timing

The past few weeks I have had a lot going on and it has been pretty stressful. But the added stress, has reaffirmed to me how important timing is when you have autism. Well, timing is always important, but it can be an especially important factor for someone with autism.

I talked about timing before in a guest post that I did a while back. In that post I emphasized how important timing is in preventing a meltdown. (You can read that post here if you’re interested.) With the stress of the previous week, and the accumulation of stress over the past few months, I have been reminded why timing is so important.

I’ve heard it said that we all have buckets and that when those buckets get too full, we overflow and the result is meltdowns or blow ups. For me, I can tell that my bucket is getting full when things become harder to deal with- when sounds that I can normally ignore feel like jackhammers in a closed room, or when a gentle touch feels like unbearable pressure. I don’t know how most people feel when they get stressed, but for me it’s like all of my senses are magnified and it becomes very hard to deal with sensory input.

However, by taking some time away from everything and refocusing myself, it becomes a lot easier to deal with the world again. It’s all about timing. If I don’t have time to regroup, even simple things can seem like impossible barriers. But if I have the time I need to relax and refocus, I can often handle the more difficult things.
Sensory Blog hop

Hate is such a strong word

People always say that hate is a strong word. But I think when you have autism, sometimes there is no other way to describe how you feel.

Merriam-webster dictionary defines hate as:

a :  intense hostility and aversion usually deriving from fear, anger, or sense of injury

b :  extreme dislike or antipathy 

I often think to myself that I hate something because of the first definition. There are things, stupid things, things that normal people wouldn’t hate, that I feel like I hate. Some of these things are the look of sagging skin on someone, the way someone breathes, or even people sometimes.

This is kind of hard to explain, but I realize that it’s normal to say you hate these things. It’s normal to strongly dislike these things and so you say you hate them. But for me, it’s not a strong dislike that makes me hate these things. My definition of hate is closer to the first definition.

When I say I hate something, it doesn’t necessarily mean that I dislike it. What it does mean is that it makes me feel a sense of anger, fear or injury. I say hate because I feel hate. Whether the hate is justified or not, doesn’t change how I feel.

When I say I hate something, I mean that it makes me want to explode inside. It makes me want to become violent or run away or try to comfort myself. I couldn’t tell you why certain things make me feel the way they do; sometimes they just do. It doesn’t make sense that I feel so strongly about something that really doesn’t matter, but it is the reality.

So, how do I deal with these feelings of hate? I focus on something else. If I focus on the object I hate, I will probably get upset and may even have some sort of meltdown. Instead, I have to change my focus to something I like instead. Then, I can usually “forget” what I hated and move on.

I know that when I say I hate something people tend to question if I really mean that I hate it. But like the dictionary says, it gives me a strong sense of “hostility and aversion usually deriving from fear, anger, or sense of injury.” Whatever it is that I say I hate makes me feel some sort of pain or anger and therefore is by definition something I hate.

I don’t always feel this way about things, but it does happen every once in a while. It’s not really something that you can just stop either. It’s an automatic reaction. So if someone with autism says they hate you or they hate something, try not to take it too personally. It’s just that we feel uncomfortable, in pain even, and that’s why we say hate.

Keeping busy

My whole life I have always been happier when I’m busy. I’ve heard people say that people with autism have a hard time being involved in a lot of different activities. That we get overwhelmed and can’t handle it. The thing is though, the number of activities doesn’t really matter so much. I can get overwhelmed doing one activity whereas I might not get overwhelmed if I did 5 different activities in the same time. The trick is how the activities are arranged and knowing what is expected of me.

When I was in high school, I was involved in nearly every extracurricular activity that was available to me. I was in the student body, played water polo, did backstage and technical theater, participated in church activities and scripture study classes, and was in about 10 service/ academic clubs – some of which I held a leadership position in. The thing is though that this was probably what I consider one of the best times in my life. Although I had a million things going on, they were all planned, calculated, expected. I knew what I had to do to make it work and I did it.

In college, the picture was completely different. I decided that I wanted to take it easy because I didn’t know how hard college would be and I didn’t want to overwhelm myself. This actually had the opposite of the desired effect. Instead of making me less overwhelmed, having less to do made me more overwhelmed. Not having to go from activity to activity caused me to become asocial. I isolated myself because I didn’t feel like I had anything in common with other people. I needed those activities to break the ice so that I could be myself. Without them, I had no idea how to interact with people and that led me to focus on my faults and weaknesses and become lonely and depressed.

Every person with autism is different and I don’t intend for you to take away from this that you should plan out an activity for every minute of every day, but I hope that it leads you to consider whether being more involved and having more social interaction would be more beneficial than harmful. Sometimes in trying not to overwhelm ourselves or overwhelm others, we inadvertently set ourselves up for failure. Sometimes keeping busy is just as important as having time to yourself.

Blaming the Cheese- Part 2

So if we don’t blame the cheese, what should we blame?

If autism isn’t the real problem, what is?

Well, some people believe vaccines are to blame. There’s a heated debate about whether vaccines cause autism and new information seems to be added to that debate every day. The problem is that people are looking for a single solution. Yes, vaccines probably can cause autism, but most likely this is only the cause in a small number of children. And even if it is vaccines, it is more than likely the mercury content in those vaccines. So really mercury poisoning is to blame, not autism.

Then, once you get past all the causes of autism, what is to blame for the hard things that come with autism?

Things like self injurious behaviors aren’t really from autism as much as they are from other things that interfere with autism. For example, a child could self injure because they have a medical problem causing them pain and are either trying to communicate that problem or trying to distract themselves from that pain. Or they could self injure because it focuses their attention on something tangible rather than the intangible anxiety or uncomfortableness of their environment. So in those cases, medical problems or anxiety are to blame.

When it comes to not being able to make friends or being bullied because you have autism, shouldn’t it be society and our skewed ideals that are to blame? If we valued people despite their disabilities or differences, these problems wouldn’t be so prevalent.

 

What I’m trying to say is that blaming autism isn’t always the most beneficial or correct thing to do. Some things are autism, but some things aren’t. Blaming autism for everything that’s hard or any time something goes wrong leads children and adults to believe that they’re broken. It leads people with autism to feel damaged, unworthy, not good enough. Because even when we can hide our autism and blend in, sometimes we still feel autistic and if being autistic is equated with everything negative, it’s easy to extrapolate that to yourself. Then we become broken people and even if you’re a broken person, you still don’t want to feel broken…

Blaming the Cheese- Part 1

I think sometimes we fear the wrong thing or we blame the wrong thing or we try to fix the wrong thing. I have a hard time understanding why people blame autism for the hard things that happen to them or their kids. I mean, is it really autism itself that’s the problem or is it something different? For example, if you almost died from eating a piece of cheese because you are allergic to it and didn’t know, you might be tempted to blame the cheese. After all, the cheese is what caused the allergic reaction. The real problem though isn’t the cheese, it’s the allergy. Cheese is delicious and fairly healthy for most people, but if you’re allergic to it then it can be a problem.

So my question is “Is autism really the problem or is it something else?”

A Different Outcome

As I learn more and more about autism and therapy- past and present, I’ve looked at how I grew up and how different it might have been had I been in different therapies. I was only in therapy specifically for autism once. It was play therapy and I didn’t see the point of it, so I stopped going. Other than that, my therapy consisted of the school speech therapist and the occasional psychologist.

Now when I say this I’m not saying that this is the ideal path for everyone with autism, but it worked for me. Although I think some additional therapy might have helped with certain things, I am at the age now where I can form my own therapy and work on things that I specifically need help with.

On the other hand, I look at some therapies used in the past and I am very glad that I was not involved in those therapies. I look at stories and videos of children having meltdowns and exhibiting self injurious behavior and I think that could have been me if I had been in a different situation. If people had tried to restrain me from being autistic, if people had tried to pressure me into situations I was uncomfortable with, if people had forced me into the mold they wanted to see, I think I would have had a lot more problems. I could see myself responding to those types of things with anger, aggression, meltdowns, self injury, and even hate and dissociation.

I have a very strong personality and I respond very negatively when people try to change my thought process or emotions. I need to change my own thoughts and emotions. Sometimes with help, and sometimes on my own. If someone tries to force me to change though, it usually makes my behavior worse.

I was very lucky to have grown up in a house where I was allowed to process things at my own speed and find my own way of responding to things. I was lucky to not have been put in a therapy setting where I was forced to comply to demands that I would have negatively reacted to. I was lucky to be challenged to grow within my own realm instead of being forced into a different world that I did not yet understand and pressured to grow there. I was very lucky.

I didn’t start researching autism until I became an adult and learned about autism in my college classes. I had no need to research autism before that. I had no need to understand autism. The only thing I was worried about understanding before that was myself and the world around me. And I am grateful that I didn’t worry about autism back then because it’s a lot to handle. All the information and stories and articles and studies and blogs and comments and videos are a lot to handle. Knowing you have autism is one thing, but knowing autism is something completely different.

Now that I know autism better I am so grateful that my family didn’t treat me as autistic. I am grateful that my diagnosis didn’t change my life. I am grateful that I was able to develop in the way I needed to in order to become the person I am today. And I only hope that others will be as lucky as I was.

Dr. Jekyll and Mr. Hyde

The past month or so has been really hard for me. I’ve been struggling with breaking down, feeling of worth, and just generally doing what I normally do on a daily basis. I don’t exactly know why these things happen. I don’t know what triggers my feelings of depression and lethargy, but I know that when I feel like that it is almost like I’ve gone to sleep. It’s like a part of me is gone for a while, like I went to sleep and part of me just stayed in bed.

And then one day… I wake up.

I can’t explain how or why it happens but it’s like I come back to myself. Like another post I wrote a few weeks ago about a strange feeling I had when I wandered half asleep to the bathroom and felt like a part of me was lost. I felt scared that it would never come back and then it did and everything was okay again.  Only this time it took a lot longer for that part of me to come back.

This isn’t the first time this has happened and it probably won’t be the last. But it is interesting to look back and see the difference. It is interesting to see who I’ve been over the past month or so and who I am now. It is almost like I’ve been two different people.

And I feel bad. I feel bad about what that different person has done. I feel bad about the mistakes I made and the hurt I may have caused. And it reminds me of all the other times that this has happened and the brokenness it has left behind me. I wish I could go back and fix it all, but I can’t. Life just doesn’t work like that.

Maybe this time though I can learn something from it… Maybe this time I can find a way to fix it… And maybe next time I can find a way to keep Mr. Hyde from hurting the ones I love.