Expectations, Needs, and Problem Behavior

I have been thinking a lot lately about my childhood. One thing I realized is that I didn’t know how to explain my needs so that someone could help with them. It wasn’t until I was on my own at a university that I could finally focus on and address my own needs.

I bought myself clothes that felt soft and made me more comfortable, so that I could handle sitting still more easily. I bought ear plugs that I used in classes when the lecture was too loud. I never had super bright classrooms in college, but I could have easily bought transition lenses and no one would have said anything about me wearing “sunglasses” in class. Now, I often use the night view on my rearview mirror because headlights are too bright for me. I also have tinted windows on my car that help with brightness during the day. I carried snacks with me to eat during class or before or after to help calm me down. I still have a car full of snacks for this.

The thing I realized is that adults expect so much of children and teenagers. If you don’t meet the expectations, you are said to be acting out, when in reality you are simply being yourself. I remember one time in high school when I got in trouble for taking notes about what the teacher was saying because I did not know how to defend myself when she accused me of not paying attention. There are many stories I can tell like that. I did not know how to communicate my thoughts or needs or desires, so I ended up getting in trouble because adults did not understand. But how can you possibly have your needs met when everything is stacked against you?

So I endured elementary school and middle school and high school, until I could finally address some of my needs in college. And this is what we require all our children to do! We require them to fit the norm, with the pretense that it is preparing them for the real world. In reality, the real world is about enjoying life and finding ways to cope with the less enjoyable parts of life. We may not understand what a child needs, but I think it is important to ask ourselves if a “problem behavior” is really a need that is not being met. Don’t just avoid the problems or force children to ignore them, give them ways to cope. Try to find solutions instead of just seeing the child as the problem.

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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Don’t Step on a Crack

Since I was a child, I always avoided stepping on cracks, even the cracks between sidewalk tiles. I thought for a long time that it was because of the little rhyme, “don’t step on a crack or you’ll break your mother’s back.” I can be overprotective of my mother so it is not too surprising that I would avoid cracks just in case the saying was somehow true.

However, I am at the age where I don’t believe in the superstition of little rhymes. So, I decided that I would stop avoiding cracks quite as much and just step on them if they happened to land in my stride. After a few minutes of not trying to avoid cracks, I realized the real reason why I have avoided cracks all these years- I don’t like the way it feels to walk on a crack. The uneven feeling under my shoes is uncomfortable to me. I dislike walking on cracks because I feel them as I step on them.

It was interesting for me to discover that the purpose behind avoiding cracks had a sensory reason. It made me wonder what other things I do for sensory reasons. I know there are a lot of things I do consciously because of sensitivity to noise or light, etc. I generally listen to music on the lowest audible setting. I use the tab on the rear view mirror while driving at night to dim the light of cars behind me. I also know that there are other things I do subconsciously, like walking on my toes or taking extra long strides while running. But it is interesting to think about the things I consciously do for subconscious reasons. For now, I am grateful to understand myself a little better, and I think I will keep avoiding cracks when I walk. 🙂

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

Want to join in on next month’s Voices of Special Needs Hop? Click here!

Feelings

I think I feel too much. That is what autism is most like for me. Autism is feeling everything acutely all the time. I literally feel everything. I feel every object in a room. I feel sounds and smells and tastes. I feel words. I feel emotions. I can’t say I feel differently than you because I don’t know exactly how you feel. I have never been you. But I can say that I feel everything physically. And it is exhausting…

I was telling a friend today that I think I love too much. Love for me is overwhelming. It makes my whole body tingle. Love is a burst of energy that penetrates every fiber of my being. It feels like it literally changes my DNA so that I am now connected to a person in a way that they are made a part of me. I love hugs because it feels like the energy inside of me finds a place to belong. Like the love inside of me connects with the love inside of someone else, and for a moment, I feel whole.

Joy is like that too. Joy is like a spring inside of me. It makes me feel like every particle in me wants to jump up and down. This is why I flap and jump up and down and smile like crazy, because the joy in me has to have somewhere to go. When I am “flapping happy”, I feel like I am flying. It is like the joy inside of me has come out of my skin and when I jump or flap, I’m releasing that joy into the world. It feels like the joy springs from me and dances in the air, and when it lands, it becomes peaceful, like it is lying on the ground watching the clouds on a cool spring day.

Unfortunately, depression and darkness are also things I feel acutely. Depression is like millions of tiny weights hanging from each hair, each skin cell, weighing me down with an enormity that cannot be seen from outside. And if the weight wasn’t already enough, it feels like there is a black hole in my chest. Opposite to the feeling of joy wanting to come out of me, depression feels like it sucks everything into me. It is a constant sucking force that seems to suck all of the air and light out of a room, making it difficult to breathe and to see anything other than the darkness inside of me.

Fear, joy, sadness, disgust, anger, and every other emotion that ever lives inside of me all have their own physical feeling attached to them. Each one is so powerful and all-consuming that I can hardly do anything else because my body is overcome by the feeling of each emotion. I think that this is why I shut down sometimes, because constantly feeling everything wears me out. And after feeling so many strong emotions, sometimes it is simply painful. Pain for me is like an exploding of every emotion. It confuses me, and I don’t know what will come out. I feel like Cyclops from the X-men before he learns how to control his powers. Everything comes out and I don’t even see what I’m destroying until after it’s done.

Why I Break Down

I’m a pretty easy going person. If someone asks to do something at the last minute, I will usually say yes. The problem is that I don’t really have an accurate sense of time. I don’t think about how long things take, I just think about what I have planned for the day. And I don’t panic until what I have planned is getting to the point where I might not be able to do it. When my schedule fails is when my mind fails to process the situation. The world closes in and I want to disappear, and life becomes so overwhelming that I don’t know how to even start to deal with it again.

This is why I panic.

I remember in middle school when I was first diagnosed with Asperger’s syndrome. We had an IEP and the adults in the room decided that I should be given more time to finish homework assignments as needed. I remember resenting this decision a little bit. After all, I was fully capable of doing everything my classmates were doing. Why should I be treated differently?

I now realize the reasoning. It’s not that I couldn’t do it. It’s that I panic. I don’t notice time going by until it’s too late. I don’t notice that I have worked on a tiny portion of my project until an hour before the assignment is due, and I haven’t even completed half of it.

The thing is, I get lost in the details. I get lost in the joy of creating, the beauty of being, the fun of doing. I get lost because I love it. I love life. I love learning. I love people. I love looking at the wheels of cars as they roll by and the shapes that make up buildings. I get lost in the little things that no one really notices. I get lost in simply being.

And it’s great. It’s wonderful. I love it and I love life. The problem is that you can’t do that kind of thing in this world. This world has demands and requirements and obligations. And as soon as I come out of being lost in the beauty, I get overwhelmed by the demands.

On the hard days, you might find me curled up in my car after work, trying to distract myself from all the noise and light and heat and pressure of the world. You might find me walking around with ear plugs in because it makes one less thing to deal with. You might find me rubbing my hands or arms in an attempt to relieve the tension inside of me.

No, it’s not that I can’t handle the world. It’s that other people don’t know the world. They don’t see the things I notice. They don’t experience sights and sounds like they are part of them. They don’t get lost in the beauty. It’s not that I can’t handle the world, it’s that no one can. No one can take it all in.

The thing is, most people don’t try. Most people filter it out automatically. They filter out what they feel is unnecessary to only focus on what they feel is important. But to me, to my mind, it is all important. And how do you handle the world when everything is important?

You get lost in it until it becomes so much that you break down.

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!

Weather and Sensory Overload

It’s been raining and windy the last couple days. It’s not a big deal, but as someone with sensory issues, it can be overwhelming.

In addition to the weather, I have been in pain for the last couple weeks. When you’re in pain for so long, it becomes difficult to block out the sensory input as well as I usually do. The noise seems to exasperate the pain, and it becomes difficult to focus on being normal.

Last night, the wind seemed to howl outside my window with such intensity that I could hardly concentrate on anything else. I put some ear plugs in and tried to distract myself from the noise. The night before, the rain was so loud that I nearly had a meltdown. Eventually it stopped though and I was able to fall asleep.

Sometimes dealing with all this sensory input seems like a fulltime job. It’s a lot to handle, and I wonder how much I can take. It makes me grateful for when it’s easier though. I’m grateful for when the weather is nice, and I don’t have to worry about pain as much. We can’t always control our circumstances, but I always try to make the best of them.

 

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!

Remembering Autism

Sometimes, I forget I have autism. Sometimes, I forget for so long that remembering is a painful experience.

Tonight, I remembered why things are so hard sometimes. I don’t know how other people see me. That is possibly one of the hardest parts of having autism. I never know if I just think I’m being awkward or if I really am awkward. But I feel lost sometimes. I feel like I’m looking around unsure of what to do or where to go.

I remember when I was in therapy that my therapist said that you should try to stay if a situation makes you feel anxious because leaving will reinforce that feeling of anxiety and the relief of escaping. So I try to stay. But it seems that staying makes things worse so many times. Staying just seems to re-tramatize me. I don’t want to remember that I have autism. I don’t want to remember that I have a hard time socializing in groups. I don’t want to remember that I don’t fit in.

Tonight, I remembered. But tomorrow will be better. I just have to hold on to hope. Tonight, I may break down and dislike myself or my autism. But tomorrow, tomorrow will be better.

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.

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.

Weighted Blankets

It’s amazing what a few extra blankets can do. In the summer, I usually sleep with at least 3 blankets. Two comforters and one soft blanket. When I am not feeling well or it’s a little colder, I can sleep with up to 10 blankets.

It wasn’t until recently that I realized it is not the heat, but the weight that makes the difference. I do get cold more easily than most, but the reason I need extra blankets to help me fall asleep is the weight.

Sleeping with enough blankets that they press upon you is like being hugged all night long. Some people think that people with autism don’t like hugs, but the truth is most of us probably do like hugs. We just need to expect them and be prepared for them. If we are not ready for the hug, it can feel more like abuse than a gesture of love. It has gotten better for me over the years, but before if someone hugged me unexpectedly, it felt like it would leave bruises from the force of it. However, if I expected it, it was the most amazing feeling in the world. It is like a relief from the sensory overload I experience all the time.

I don’t get nearly enough hugs, but I am very grateful for the ones I do get. I am also grateful for blankets that feel like hugs and help reduce the sensory stress so I can sleep at night.

Sensory Savers

I carry a set of earplugs with me. I keep a pair in my car and in all my emergency kits.

I hate earplugs, but… they help me blend in while getting me through the most difficult circumstances. I have used earplugs in class when a video was too loud or if just the class in general was too loud. I have used them to fall asleep when the world just seemed louder than normal. I use them less now than I used to, but they are my coping skill when I can’t handle things.

I feel like my life is a series of trying to blend in by finding ways to do normal things abnormally. Not that anything I do is really abnormal, it’s just thinking outside of the box.

Recently I discussed with my therapist ways to address my sensory needs to make life more manageable. I guess I tend to neglect my needs in favor of appearing normal. So I haven’t taken time to find sensory stimuli to reduce stress in my life.

Hearing is one thing that has been pretty easy to find ways to deal with it. I can easily slip a pair of earplugs in and significantly reduce the pain I feel from excruciatingly loud sounds. I still feel nearly constant pain from all the sounds and sensory input surrounding me every day, but I’m going to start looking into more ways to fulfill my sensory needs.

Up until now I have learned to find peace within myself when everything becomes distressing. But it’s nice to know that it doesn’t have to be that hard anymore. It’s okay to deal with things differently and use things like earplugs and textures and smooth surfaces to help me feel better.

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!