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Category Archives: Autism: Reality

Autism: Not Delusional

And still I want to go back in time. It is a very real battle, and I am not sure I can express it well.

I know what I would have done, if only I knew – but it is not like that chance will come around again. It never does. Not really. How can I learn from the things I did wrong, when society won’t give me that chance?

It permeates my days, and captures my mind, and I cannot move forward. It isn’t that I won’t. I am stuck. Obsessed. Fixated. Perseverating.

I can’t move on, or dream other dreams… what else fills me with such passion? What else fills my heart with longing.

There is no such thing as time travel. I hear it again and again, often in the voice of my highly logical, autistic son. You can’t go back. It doesn’t matter.

Only it does, and I want to, and explaining to me that it is impossible does nothing to lessen the severity of my desire. I want this. More than anything else, I want this.

Like a toddler who is told they cannot have a toy, I do not understand. This is my weakness. This is my strength. I cannot let go.

A lifeline – does it cause me to miss out on my future, or is it the tool I need to carry on, this desire, this demand, this scream of frustration… I must go back. I have to – don’t you see?

There is no future without the past. I cannot move on forgetting who I am, and who I am was torn from me somewhere back there. Back in those days that seemed to never end. Back in that life that brings me such pain to remember, but I must.

It wasn’t a part of me I left behind – they were all of me. The accumulation of my dreams, my passions, my purpose to live.

I exist in the present, but no more than I would exist in a nightmare. I don’t belong here, alone, having lost that which I came for.

There should be logic in my mind, should there not? Isn’t that a qualifying factor in Asperger’s? Only I am not logical. No one could accuse me of that fault. I can see the connections. I know the part I play in this life I have been given. I have no delusions of how great and faultless I am.

I know of my failures – more than anyone else, I know where I went wrong. But should that mean I cannot start again?

It does not matter that the laws of time and space, history, knowledge keep me from these desires of my own.

Impossible is living the life others have required of me. Impossible is understanding that they are demanding one thing, while telling me another. Impossible is living forward when I only understand what is behind.

So they will find me, seeking with all of me, to return and change the patterns of the past, so I can live in the future.

Impossible is their world, not mine, and I am not delusional.

 
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Posted by on November 14, 2015 in Autism: Reality

 

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Autism: Too Much Information

People who know me now would often say I am smart… I guess that is the word.

That wasn’t the case when I was a child, as I was so quiet, and rarely revealed my understanding to those who judged. Also, I was so anxious about my schoolwork, that I often failed to hand it in. They thought I was slow, yet never held me back a grade, or referred me to specialists.

Since I have been an adult, however, my grades (at college) have been at the top of my class, and the work I have done outside of school (for our adoption, for seeing the psychiatrist, for Bible studies and such) has been far above what “anyone else has done,” so I am told.

So they think my intelligence is high.

People – teachers included – respond to me as if things that are a challenge for others are easy for me.

Yet I would argue that fact. There is so much I don’t understand.

It is true that I put all of myself into my projects – to the point that I overwhelm those in charge. I have also learned over the years how to study in a way that I memorize the facts well, so I nearly always get exceptionally good grades on tests, and am able to talk about my interests as a specialist.

I am not, however, smart.

I struggle with even the most basic of understanding when I am required to read a lot of details. How to manuals go way over my head. I get frustrated in reading anything with “too much information.” I go into meltdown if there are too many steps to follow.

So often I get things wrong, and people challenge me as if I made the mistake on purpose. I should have been able to see that another choice was better – only I can’t see it.

I can’t read the books of Leviticus or Deuteronomy in the Bible; there are too many rules. I do read them… it is just that I can’t understand. There is just too much there.

I really struggled in trying to find out how to change my home page on my blog, or how to separate my blog posts into categories on separate pages. These were so frustrating, and I ended up breaking down in tears, and asking a friend for help – and still struggled to understand.

While I love drawing simplified floor plans, actually reading detailed blueprints has proven to be a struggle to me. I can stare at the page, and think I understand, but so often get it wrong.

I struggle with slight variations in words, so that multiple choice tests have become an issue for me. Some questions look identical, and yet the answer for each is different.

Today I tried reading through the rules and regulations for getting provincial disability – but there was so much information there, that I could not understand it.

There are so many things I struggle with, and so when people tell me I am ‘smart,’ I cringe. They will be disappointed. They will get upset at me for things beyond my understanding.

At the same time, these same people tend to dismiss me when I talk about my interests, such as when I had my children, and tried to discuss their disabilities – or when I was being tested for my own. They are so certain that they know best, or that I am being negative, when in fact, I am very rarely wrong in these things.

It is difficult to express to others how I can understand so well in some situations, and know so much in terms of my interest, when a simple list of directions can put me in meltdown.

It all depends on how the information is presented, I guess.

I had hoped to have a psycho-educational assessment done as part of my Autism Assessment, however, as an adult, that is not available to me. I suppose I will have to try to figure out on my own why some things are so hard – and to try to explain to others that in some things I just can’t.

However, for those things that I know I would really like them to believe me.

 
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Posted by on November 10, 2015 in Autism: Reality

 

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Autism: The Wrong Skin

It came upon me unexpectedly, as it often does. Was it timing, food, exhaustion… I really don’t know.

My entire body was irritated, as if I had crawled into the wrong skin. Skin that was too tight, and possibly made of wool.

Itchy, achy, irritated… I cringed as he came near, though I do not know why.

He wasn’t doing anything wrong… he wasn’t even doing anything different.

My day was controlled – I had nowhere to go, no one to visit. Nothing had happened, as far as I could see, to cause this agitation. My house was clean, and smelled good, yet I had not been overly busy. The sun shone for several hours, so it wasn’t the darkness. I slept okay. I ate decent foods.

Yet as he walked up behind me, I cringed, as if he were someone I didn’t want around – but that wasn’t true. I wanted him to leave. Not leave the house, just leave my space… yet he wasn’t invading it; I felt like he was.

How could I tell him, you make my skin crawl?  That would hurt him. That isn’t what I meant. Those were not the right words. I didn’t say them, but I thought them. Please Go Away!

I love you, but I’m wearing the wrong skin today. It isn’t your fault, you have done nothing wrong, but I don’t fit in this body right now, and I don’t want you to touch me.

The moment ended, yet everything was wrong; still everything felt wrong.

He took my hand as we walked, as he always does. Today it hurt. I wriggled my fingers. I moved them to different positions. I tried to ignore. Today it hurt though, and nothing I did reduced that pain.

I pulled away. I am sorry. My body hurts today.

Today your touch feels like nails on a chalkboard, yet it isn’t you.  I don’t want anyone to come close… today.

Please GO AWAY! Please don’t stand behind me. Please don’t touch me. Please don’t talk to me… I am going to cry. This hurts. It hurts so much… You’ve don’t nothing wrong. I don’t want to hurt him.

I say nothing. I pull away. I am sorry. He can’t understand.

 
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Posted by on November 9, 2015 in Autism: Reality

 

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Broken Contact Lens

There were any number of topics I could have chosen to write about today. Inspiration has been flowing through me for the last little while, and already I am several days ahead of myself with my posts, but my contact broke today.

A little under two years ago, I decided to try reusable gas permeable contact lenses in place of disposables. I was quite proud of myself for getting through the adjustment period – which was torture!

Truly, it felt like jagged pieces of plastic sitting on my eyeball, and every time I blinked, they would move and hurt. I wondered for those weeks how this couldn’t be damaging my eyes, but I had read that this type was healthier than disposables, and so I pushed through.

At the end of the adjustment period, with the exception of times when I got dust in my eyes, I liked my GP lenses so much better than my disposables.

My sight was clearer, they were much more comfortable, the cost was less, and I could look between distances without getting dizzy and unfocused. I really liked them.

However, in order to not revert to the pain of those first weeks, I had to wear them nearly every day. Some days I would only wear them for a few hours, and others for the entire day, but I couldn’t go more than a day or two in between without them becoming uncomfortable.

And then today, as I was washing the lens prior to inserting it, it broke. I don’t think I pressed hard on it or anything, but I have had them for a while, and I guess it just became fragile.

As I would have to go to the ophthalmologist for both an eye exam and a contact lens fitting, both of which are very expensive, before I could even order a new pair, I guess I will just stick with my glasses. I can’t afford the appointments at this time, and it would be weeks before my contacts would be in… I am not ready to be tortured again.

Although this frees me from having to wear them every day, it also makes me sad. I really could see so much better with these lenses – especially in my right eye, which has astigmatism. I could see stars better than at any other time since I was a teenager. I could see distances which my glasses do not allow.

Glasses, which only work in a certain line of sight, make me dizzy. Disposable contact lenses, which only adjust for distance, also make me dizzy when I look at things that aren’t quite so far away – and they were also not as good at correcting my vision.

It seems unless I am willing to go for laser surgery, or endure the struggle of adjusting to gas permeable lenses again, there is no real solution to my vision issues, and I almost want to cry.

 
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Posted by on November 7, 2015 in Autism: Reality

 

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Autism: Adjusting to the Time Change

It is 6:30pm, and already I feel like it is time for bed. Is this really the way time is supposed to be? It seems so dark, so early.

We have already had our supper, drank our tea, and took our dog for his walk. Normally it is closer to 8pm when we have completed these routines, but it is time change week.

Despite my medication, I was up by 8am. I won’t complain about that – however, I was then wanting lunch around 10. I held off, but it was still just after 3 when I started wanting supper. Forget the hour we gained, it feels more like two.

For some things, I see the connections really fast – if a child will always fall apart after a certain event, I will anticipate it, and cringe. The connections between food and behaviour were so ‘loud’ to me, it was a wonder that others couldn’t see it. I know that dark days leave me feeling drained and depressed.

So many patterns are so clear to me – but the changing of the time, like the number of days in a month, took me many years to figure out.

Spring ahead, fall back. Spring ahead, fall back… it has been the same every year, but it always takes me by surprise. Which way do we go again? Spring ahead, fall back.

I think I was nearly 30 before I could remember that. The change is still hard on me.

It is dark, and though it isn’t yet 7pm, I want to go to bed.

 
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Posted by on November 5, 2015 in Autism: Reality

 

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Autism: Stomach Pains

The anxiety, I think, goes first to my stomach. My response to food is much the same.

My parents have told me that I used to constantly say I had a stomach ache – even if the pain was in my feet. It got to be that whenever I told them my stomach hurt, their first question was, “where does it hurt?”

They also stopped believing me when I told them that my stomach hurt over food, and so would make me eat the food anyway. What was really hard was when I ended up in the hospital at the age of 7 after an allergic reaction to Kraft Dinner. I told them. I knew this was the truth. It wasn’t until my early 20’s when I tried eating it again, with the same response (over only 1 tsp of the food) that I was actually believed.

Only as a teen and adult, I have realized that while I may have used the term “stomach ache” to refer to any pain (I have an expressive language disability, which made describing what I was experiencing to others especially difficult as a child) I do very often have a stomach ache, and it is very often caused by foods I have eaten.

I have an allergy to eggs. I have been tested for that one. I have an intolerance to dairy. That hasn’t been proven, but is very easy to tell with the strong reactions I have. I can’t even drink a little bit of milk in tea without curling up in a ball in pain. I was nearly 30 when I figured that out, though, so who knows how long I was suffering with it before that point.

As far as I was concerned, my stomach always hurt. It was hard to tell when it got worse – until I took out the dairy, that is.

My stomach still hurts most of the time, though I can really tell the difference when I have chosen something made with butter as opposed to margarine. I will sometimes push through it, because I like it so much (like for ice cream) but then the pain is my choice. When I was a child, I was supposed to eat what was given to me; I had no choice, and I was almost always sick.

There were also the times when I hadn’t eaten much to have that response. Christmas time and birthdays were always hard on me. Going to school, being asked to work in a group, being called on in class, the annual 5 minute speech (which I never quite understood how I got through, and others in my class always thought I was going to faint or be sick to my stomach – such things are cruel for people such as me… almost abusive, but that is a thought for another time.) I was always sick.

I know if I eat a lot of wheat or soy, that will also cause me troubles with my stomach. I have to stick to small amounts of these foods. Others may say it is all in my head… no. It is in my stomach, and it is very real.

So these days when I say my stomach is hurting, it still remains a common comment. I hope, though, that now that my past issues have been proven, people will be quicker to believe me, and hopefully try to understand.

Today my stomach hurts. It hurt yesterday, too, and much of the last couple of weeks.

I really need to look at the foods I have been eating.

 
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Posted by on November 4, 2015 in Autism: Reality

 

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Autism: My Love of Baking

I think that I like baking for much the same reasons that I like doing laundry – they make my house smell so good!

For several years, though, I stopped most of my baking due to my egg allergy. The food just wasn’t the same without eggs. It would crumble, and be hard to eat.

Then, at a time when my egg re-placer was on back order at the health food store, I tried using tapioca starch instead. Suddenly I could bake again! The food tasted good, was the consistency it was supposed to be, and best of all, it held together!

By that point, however, I was working outside of the home, and just didn’t have the time to bake. I thought about it often, but the energy just wasn’t there.

In the last little while, I have been baking again. Once more my house smells so good, and I feel content baking desserts for my husband and son.

Only now I am on a new medication that causes me to gain weight – a lot of weight – like 17lbs in 4 weeks weight, and that scares me. My psychiatrist told me this would happen, but I didn’t expect this. I wasn’t really eating much more, and I have never gained so much weight in such a short period of time in my life. I have never weighed so much in my life.

It seems unfair that when I am in a place where I can finally enjoy food, the medication I am on causes me to gain so much weight even without eating more, that I really have to watch my intake.

So I don’t bake as often as I would like.

Tonight, however, we are having care group in our home. For those who don’t know, it is a small group of 8-15 people, or so, from our church, who get together once a week for Bible study and to check in with each other on how life is going.

I can bake for care group without having to worry that I will eat too much, and my house smells so good!

This afternoon, I baked 2 loaves of pumpkin bread, and have an apple crisp ready to go in the oven in a couple of hours.

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I have also been doing laundry all day, which is hanging to dry on indoor drying lines (because it is fall, and wet outside.)

Today, the very act of breathing brings me such peace and contentment, for my house smells so good.

 
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Posted by on November 2, 2015 in Autism: Reality

 

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Autism: Fears, Obsessions, Confusion

If only I had known… the inner workings of my mind and emotions are much more complex than they appear.

The first time this really got me into trouble, I was seventeen years old. The brother of a friend had just died in a tragic accident. He was barely an adult. A 10 year old boy died the same day as a result of the same accident.

What happened was the young man fell off the 22nd floor of an apartment building. The boy looked up to watch him fall, and was struck by a truck – the driver had also looked up, and didn’t see the child.

Events such as these bring our mortality into light, and my friends and I were no exception.

The challenge was that I was struggling through a severe case of Post Traumatic Stress Disorder at the time. When I say severe, I mean it; I couldn’t close my eyes without having flashbacks to the abused child I was. I was running away from people and places constantly – often with little or no warning. I was hiding under tables, under beds…

I could walk into a room, and immediately know the best hiding place, all of the exits, and the floor plan of the space I was occupying.

I couldn’t handle school. I had friends, but would only go places if my boyfriend was there.

My boyfriend… he also happened to be my best friend, and I was completely dependent on him that year. It wasn’t fair to him, but I needed him, and he was there.

And then this happened. This event that was so shocking, so close, so real – and then I was lost.

Suddenly our friends were telling me that I was in love with someone else. Frank believed it, too, and it hurt him. I could tell it hurt him, and I didn’t know what to do – for I didn’t believe I was in love with this other boy. I didn’t know what they were seeing, but I didn’t believe it to be true.

However, the more they said it, the more focused I became – which confirmed their belief.

I started looking at this other boy constantly, and became obsessed with thoughts of him. I began dreaming of him, and it worried me. I didn’t question that in my dreams I was with John – yes – but I was traveling the world in search of Frank. It didn’t cross my mind that this was my fear, not my desire – for others told me this was true, and I believed them.

Suddenly I was in the arms of this other person – and I didn’t belong there. I missed my friend. I felt lost and alone… but I wouldn’t return to the one who still loved me, for I hurt him. I hurt him, and I didn’t know why, and I didn’t know how to stop myself from hurting him again – so I stayed where I was.

I was afraid – so afraid… and to others it looked like desire. They were so sure they knew what I wanted that I believed it myself, and I stayed. Like a little child lost in the woods is told to stay where they are so others can find them… I stayed. What else should I have done?

From that relationship came my son. I won’t say I didn’t love his father – but I didn’t understand how I came to be with him, and I didn’t belong there.

That was the first time, and I didn’t understand that my biggest fears present themselves as desires to others; so much so that the others have no question that they know what is best for me – and yet, they are so wrong. So often wrong.

The next time was when my cousin was sick. I loved my cousin. Yet when I knew she was dying, I dreamed of her death. I wanted it to be over… but no, I didn’t.

I was afraid of what was coming, and wanted that fear to go away, but I didn’t want her to die. I know I didn’t want her to die – and after…

But it looked like this was something I wanted. I was so focused, so matter of fact about it. I spoke of her like she was already gone, like there was no hope. I maybe even smiled – but inside I was breaking, even as I ached for it to be over.

Maybe it is better how others do it – they hurt, they grieve, they move on. I obsessed. I responded poorly. I was locked in depression for 2 years after. I have never really overcome that experience.

It was after Wendy died that I understood what happened with Frank. It wasn’t something I wanted. I was afraid – and I believe them when they told me I wanted that change. They were wrong, but I didn’t trust myself. I didn’t understand what I was thinking or feeling.

I wouldn’t go back and change that, for from that came my son – but I lost my best friend in the process, and 20 years later, that still hurts.

I know there have been many times over the years where my fears and obsessions have confused others – confused them to the point where they are absolutely convinced that they know what I want more than I do, and they are always wrong.

Did I want my children taken from me? NO!!! – but they would have said yes. Not yes that I wanted them gone, but yes that it was better for me – because in my fear, I was terrified they would be taken, which made me look guilty.

Because as I tried to express to them my need for understanding, what they heard was that I found it to difficult to raise my children – but that was not the truth. The truth was, I was mostly fine with my children, but found it difficult to deal with other people.

Even now, I find it hard to distinguish between what I want, and what I am afraid of; who I am, and who others expect me to be; how I feel about something, and how others tell me I feel about it.

It is all very confusing, and often stressful to me – especially when I have an obsession over a fear, that appears as a desire that would hurt someone I love. I want to shout that is not true! But they wouldn’t believe me anyway.

I am chipping away, chipping away, at who they have told me I am – but I don’t think I will be done anytime soon. Somewhere along the way I got lost in their expectations, and in their confidence over who I was… who I wasn’t – and I still don’t know who I am.

 
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Posted by on October 29, 2015 in Autism: Reality

 

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Autism: Who Am I Really?

Today my energy is very low, and I am wondering if my thoughts on gardening, preserving food, and living a more self-sustaining lifestyle are actually practical for me to consider.

My dreams are vast, inspiring, and active – but my life has never followed that pattern. Again I find myself seeking… always seeking, to be someone I am not.

I can do some basic sewing, and can prepare crafts for preschool age children, but I am not the type of person who can just pick up some materials, and make something beautiful. I want to be that person, but it is not who I am. I am a dreamer. I like the pictures, the smells, the decorations… but outside of my own thoughts, I cannot bring these things to reality. I want to be able to, but, that is not who I am.

During the darker months of winter, I find myself designing and dreaming over a vast fruit, herb, and vegetable garden. In the spring, I want to plant. The desire is deep within me. However, once summer hits (along with the heat and horrible allergies) I battle against going outside. My energy is too low, and the grass and heat make it difficult to breathe.

While I can grow some things – sunflowers, pumpkins, tomatoes – I really don’t know what I am doing (or have the energy to keep up) in order to grow much of my food needs for the year. I wish I could. It seems like a worthy goal – but it isn’t who I am.

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Perhaps I could learn to garden, and I think I would like to, but do I have the energy to keep it up? I never have in the past.

When autumn is coming near, and the leaves start to fall, I dream of a pantry full of canned fruits and vegetables that I have preserved from my own garden. I can imagine myself going in to choose my foods throughout the winter, and I feel content within my dream. But canning my own food would mean I would have to spend the time learning how to both garden, and safely preserve the food. While I might be able to learn how through a course taken with others, having to go out to learn among others would be so exhausting, I likely wouldn’t follow through.

At this time, I own three cats and a dog. I am an animal lover – that is not just a dream – but when I ache to own sheep, goats, chickens, llamas… I see myself playing with them. I know intellectually they are a lot of work to care for, and still I long for them.

I have had many rabbits and guinea pigs in the past. Even they were more work than I had energy for. I did love having them – but for me, who has always had such low energy, is it practical to dream of having more?

In my mind, I have such beautiful ambitions, such wonderful ideas – yet they do not line up with who I am. I am a dreamer, and unless I can find a way to bring those thoughts into reality (without going against who I am, for then I will only fail again) I really ought to just stay true to the person that I am.

So maybe instead of praying for a life apart – private land, large gardens, huge pantry… I should instead be seeking a way to decrease my expenses, while also decreasing my workload, in order to function within the level of energy I have been given – which is incredibly low.

How do I pull away from this lifestyle of always trying to do more, to push myself as people have often told me to do – when a lot of the time, it takes all of my effort just to get out of bed in the morning. How do I turn from what I believe others expect of me, and who I thought I should have been, and allow myself to be who I really am?

And who am I, really?

 

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Autism: I Have To Be Who I Am

My son shakes his head, laughs, and tells me that I am impulsive. He would never work so hard to make unnecessary changes to our house, and what is more, it isn’t ‘normal’ for other people… and above that, the things I do aren’t well thought out.

Take the other day, for example, as I got trapped halfway down our basement stairs with the lawn swing in my hands – because it didn’t fit. “Why do you need the lawn swing in the house?” he inquires, with an incredulous grin on his face. “Because it will be ruined staying outside in the winter, of course,” I tell him.

“But it doesn’t fit,” he tells me. He has me there, but I am determined, and go to get the tools to take the legs off so I can get it the rest of the way down the stairs. “Uh-huh,” he says as he turns away, “like I said… impulsive.”

“But I am not impulsive,” I say to his back. I had been thinking of this for days – maybe even weeks – before I actually followed through. I tell him this and he replies, “okay, so not impulsive, but definitely not well thought through.” As I stand wedged in the stairwell, trying to take the bolts out of the legs of the lawn swing, I think, he has a point.

“I have to be who I am,” I tell him. He laughs again, and shuts his bedroom door. My practical son, who would never get himself into such tight spots – which I do almost daily.

Well, now I have a lawn swing in my basement. It might not be normal, and it might look out of place, but I like the feel of swinging on it while looking out the window. It works for me. Don’t ask me to be normal… that I cannot do.

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On another day, I am struggling to carry an aquarium full of plants down the stairs. “What are you doing now?” he asks me. “Bringing my plants downstairs – they are cold,” I tell him. “Uh-huh, you know it is colder downstairs, right?” he asks me. “But I can heat up that room with the oil heater,” I say, “I can’t do that upstairs. The space is too open.”

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Along with my plants, I bring down my computer, and once again rearrange the family room. “You aren’t going to like it down here,” he tells me, “I am loud.” (he talks to his friends on Skype most nights and weekends.) “It will be fine,” I answer, “my plants need to live.”

Once more he shakes his head and says, “impulsive!” as he walks away. “I have to be who I am,” I say again, and he laughs.

I have to be who I am! I think to myself. I may do unusual things, that even my autistic son thinks are strange, but they make sense to me.  I have to be who I am. I can’t be anything else.

 
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Posted by on October 19, 2015 in Autism: Reality

 

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