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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Showing What Autism Feels Like

I have been watching “The Good Doctor” recently. It is my favorite show I have ever seen because I relate to so much of what the doctor goes through. I have read online that this show has caused a lot of controversy in the autism community. Some people even refuse to watch the show because they feel that someone with autism should play the main character or be more involved in the filmmaking. Another reason people are opposed to the show is that it only shows a narrow view of autism. It shows the experience of “the autistic savant”, which is not how most people with autism experience the disorder.

I understand these concerns, and I understand the desire to have more people’s experiences shown on television and in movies, but I understand it even more after watching this show. The Good Doctor is everything I ever wanted to show people about my autism but never had the ability to communicate. I encourage everyone close to me to watch the show because it so accurately portrays my thoughts and feelings. I look forward to every episode because it shows all of the things that I cannot show and tells them in a way I could never do. I wish that everyone could have this experience. I wish that everyone could refer their friends or family to a particular character, or even episode of a show, and say that is my experience- that is what it feels like to be me.

I have spent my life trying to hide everything about me that could be considered autistic. I have succeeded in this to the point that even therapists did not believe that I had autism. I remember one particular school counselor in high school that told me I had a hard time making friends because of my level of intelligence. She said that I probably did not relate to the other students that had lower IQ levels than me, which was interesting because she did not even believe me when I told her my IQ level and said it was probably 40 points lower than I stated. Anyway, the point is that I am very good at hiding my autism, and my intelligence helps me to do that.

Sometimes, though, I would like people close to me to understand what I go through. Even though I do not like to “be autistic”, I would like my friends and family to see how hard certain things are for me. However, I have trained myself to not show autistic traits, and I cannot force myself to show my feelings, even to the people I trust the most. The only time that you can tell I have autism is when I have a mental breakdown, which makes it too late to explain my feelings and rarely happens around other people.

I understand that not everyone with autism is a savant or a genius or relates to Dr. Shawn Murphy in “The Good Doctor”, but it is important to have shows like this. It is important to show someone’s experience. Even if it may not be the experiences of the majority of people with a disorder, it is a step towards explaining the unexplainable. It is a way for someone to understand the experiences of another. I hope that they make a lot more shows like this. I hope that they make more shows that try to exemplify the experience of a particular group of people. This show has meant so much to me over the past few months. It has been a source of comfort and commiseration. I hope everyone is able to experience that someday.

You Can Only Handle So Much

I have been struggling lately. I have a hard time regulating my emotions and finding positive outlets for them. It is probably because I am working two jobs. The interesting thing is that working two jobs does not feel hard most of the time. The jobs themselves are fairly enjoyable, and I rarely feel overwhelmed at work. The only part of working that has been overwhelming is scheduling the jobs around each other. It is hard to make sure you get everything done when you don’t have enough hours in the day to do everything.

The real struggle though is everything else. Having autism means that everything is bombarding my senses all the time. I am extremely protective of the autistic side of me. I have developed a long fuse or way to hide my autism despite it wanting to come out in difficult situations. The same thing is true for my depression. I prevent these parts of me from coming out just anywhere because I know most people do not understand and that could potentially be very dangerous for me.

Working two jobs has forced me to take care of myself in ways I have not done before because I do not want the vulnerable parts of me to come out at times when I am working. However, self care can only go so far. I still work two jobs and have depression and autism, so I tend to get to the end of what I can handle when I get home. This means that I have been having more meltdowns and breakdowns and more thoughts of suicide and self harm.

This is especially true at times when my body needs something. I find myself to be overly aggressive when I feel hungry. I have broken things or yelled at people or thrown items when my stomach feels even slightly empty. I have also struggled with self harm and suicidal thoughts and feelings of desperation and loneliness when I am tired. It is interesting to me how completely hopeless I can feel at night, but it all seems to dissipate when I wake up in the morning. How can I go from the brink of suicide to feeling mostly at peace in just a few hours?

The best explanation is that I am not truly suicidal. I love my life. I do not want to die. But my body is unable to handle life and simply wants the pain to stop. I remember times when I was truly suicidal. I was convinced that I was a burden. I felt that the world would be a better place without me. I felt sure that my family and friends would be better off without me. That is no longer the case. I don’t feel like anything would be better off without me. I just want the pain inside me to get better. I want to stop hurting so much.

Of course, there are lots of ways to help your body handle more. Eating, sleeping, hugs and other physical touch that helps you feel loved, spending time doing something you enjoy or being with someone that relaxes you, and anything else that helps you feel better mentally, physically, or emotionally allows you to be able to handle more of life. I have learned from spending my life trying to hide my autism and depression, etc. that you can force yourself through almost any situation if you use the right resources to help your body cope.

So, I guess the point of this post is to remind myself and others to find ways to cope. Find things that relax you, that help you feel loved and wanted and needed, or that meet a physical need. By finding and doing things that help your body feel better, you allow your body and mind to be able to handle more difficult situations. You allow yourself to be able to get through things you could not handle before. And you might be surprised at the difference it makes it your mental and emotional state.

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.

Life Savers

Tonight I had a meeting for church that lasted two hours. After about the first hour, I started getting restless. After another 20 minutes, I felt like I was dying inside. I pulled out the little ziplock bag I had brought with sour gummy worms and munched on those to get through the rest of the meeting. By the time it was over, I just about flew out of the chapel. Those gummy worms were life savers in that meeting.

Having autism doesn’t mean that I can’t do everything I need to do or that I can’t do what everyone else does. It just means that some things are harder, and sometimes I need more life savers than the average person. Granted, there are some things that I really can’t do right now (maybe someday, but not right now), but in general, I can do the important things given enough help.

Sometimes I feel like I need too much help. I feel like I am constantly in need of someone to save me from myself, from how I feel. There are some people that have literally been life savers for me throughout the years. They have talked me through suicidal thoughts and urges. They have helped ground me in situations where I felt lost and didn’t know what to do.

We all need life savers at some point though. There is a point where we all break or when things become too much for us to handle. Life circumstances and events and our physical, mental, and emotional states, all come together to determine where our breaking point is and when we get there.

For me, autism feels like taking in too much of the world. I feel everything. Sitting in a room, I feel like I can feel the gravity of everything around me. I feel the chairs and the lights and the people and the curtains and the jackets and the sounds. And it’s a lot. It’s a lot to feel every object and every emotion and every noise. And in loud rooms with lots of people shifting in their seats or writing on paper or even just breathing, my breaking point gets extremely close. If I have eaten and I am in a good emotional state and I am not in pain, I can usually handle it fairly well. If one of those things is lacking, I break pretty easily.

I remember one particular night when I broke more than I ever had before. I was at a camp for young single adults, and we were in a devotional meeting. I had been stressed from helping a friend move, and my mom had broken her arm, and I was in a period of severe major depression, and I had worked all day and then sat in traffic to get there, and the microphone was extra loud, and single adults tend to chatter a lot, and I was not feeling well physically. All of that added up to far more than I could handle, and I broke. The only thing I could think about was that I had to get out of there. I had to get away. It didn’t matter how. I just couldn’t handle it anymore. Luckily, I had a wonderful friend with me that night that understood and stayed with me and helped me get to a quiet place where I felt comfortable and could become okay again. I don’t know what would have happened that night without her.

I read about children and teenagers and adults with autism wandering off, and no one knows where they are. It is really not that we are trying to leave safety. We are trying to find safety. We are trying to get to a place where we can be okay again. Maybe if we had more life savers, we wouldn’t get to that point. Maybe if we could lighten some of our burdens, we wouldn’t reach our breaking point. There is not a one size fits all solution, but what I can say is that we need our life savers. I know I need mine, and I am so grateful for all of my life savers over the years. I don’t know where I would be without them.

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!

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.