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Monthly Archives: December 2015

Autism: Layer Upon Layer

Two hours I spent this afternoon with my cat curled up, and purring, in the crook of my arm. It isn’t often I sit still for that long – my skin frequently irritates me, and I need to move around. But today… it was like holding a sleeping baby. So warm, and trusting… it seems that moments like this are what I am made for, and I had no desire to disturb him.

My tablet ran out of batteries, and for a while I just sat there, wondering if I should sleep too. It was then I remembered that I had my library book on the floor beside me – One Thousand Gifts by Ann Voskamp. So I began reading. It is this book that is teaching me to live, and find thankfulness, in each moment. And that moment, with my cat purring in my arms, was a great one.

People should purr – don’t you think? How comforting it is to be so assured that someone is completely content to be where they are, right then – even if that means being with me! Just joking… sort of. Animals love me at least. I am comfortable with them. I think that makes all the difference. People are just too unpredictable.

It is still the Christmas Holidays, and my husband is off from work until after New Years. I am glad he has the break – he certainly needs it – but I am out of my routine, and that can be very unsettling for me. We have had some really good moments during his break, and I am thankful for them, but I am really looking forward to returning to my routine.

I can breathe here. In my most uncomfortable moments, when I am visiting with people (though I like them) or unable to do my housework, practice my keyboard, or take time to knit for the paralysis that sets in knowing that someone else is home. I should be used to him by now, but it seems the only person I am very comfortable with is my son, who has been with me a very large portion of every day since he was born (he was homeschooled after all.) Anyone else, and I have to push myself, with flushed face, and a strong inability to think or concentrate, and often I can’t even do it then. In my most uncomfortable moments, I can breathe in the relief that comes in knowing that for the foreseeable future, I will be home, and can return to that routine I love so much.

It helps. It helps a lot to not have the constant anxiety that accompanies thoughts of work – any work… always. The anxiety that never really lets up, and clenches my hands into fists, my stomach into knots, my head in a vice until the pounding refuses to let up. I have been taught that work is the goal of life, and anyone who doesn’t work is lazy, useless…

But my disability went through. It went through fast. When 60% of applications for federal disability are rejected, and many take four to six months to hear an answer, it seems they must have seen strong reason to agree with my counselor and psychiatrist on this one to approve me in the first month. Therefore I am trying to accept it. Not as a fault, but as a necessity. I have always known I was not well enough, strong enough, stable enough for the work… for any of the work that I have tried – but I pushed myself just the same.

From pushing myself, I have come to my worst failures. The ones I just can’t let go of. That should have told me something, but I believed their words. I believed their labels. I thought I just needed to push myself more – and then I fell apart again.

Now… I have never judged people on disability as if they were fine – yet always I tried, and failed, and hated myself for failing, to not end up there, too… and now I have layer upon layer of pain and failure to overcome in order to just be okay.

Now I am accepting – maybe accepting – that this is a part of me. A necessity. And with this acceptance, my fists unclench. My stomach unravels itself. The vise around my head loosens. And I can breathe, and find thankfulness and peace in sleeping, purring cats.016

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Autism: First Jobs

My son has gone for his very first job this afternoon! Though it is temporary, and weather dependent – and he is just working with my husband – it is work, and he will be paid for it. I am so proud of him! Of course, I was proud of him before, but this is a step that was difficult for him… very difficult, as he had to leave the house, work outside, and do a job up to the standards of others (talk about anxiety provoking.)

He could have said, “no,” but instead answered the request with a, “sure!” Big, big step (though it may not look like that to others.)

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My husband’s work is closed over the holidays, but they needed someone to go in and clean off snow, and bring in from the gates any donations that people left out there (though there are signs asking them not to, people will drop off items at the gate, which will then get ruined if left there.) My husband was the volunteer, and was told he could bring in a helper.

He could have brought in one of the guys he worked with, but he decided to give our son a chance. He will be paid minimum wage – but that is a lot more than he has ever been paid before!

It is a quiet job, with only the two of them there. He only has my husband to answer to, who will tell him exactly what needs to be done. It is probably the best situation for a first job for my son, who can follow through with minimal anxiety.

I am so thankful that this opportunity was presented to him. That my husband decided to give him the chance. That my son was open enough to accept (he is very often frozen with anxiety, and his first answer to a request is often, “no.”)

So because all of these things came together, he is now out in the snow and cold (while I sit typing under my warm blanket) working for his very first paycheck.

I am thankful, and I am so proud of him!

 
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Posted by on December 30, 2015 in Autism: Out in Public

 

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Autism: Christmas Celebrations

Once again it is snowing. We are supposed to get 5-10cm, my husband told me. But I am in my home, under a blanket, and quite comfortable. Let it snow!

It sure is pretty on the trees and mountains. I love to look out the window and see it, and to feel the freshness in the air as we take our dog for his walks. There is something just magical about this season – although if I had to drive, or go anywhere, I would more likely be anxious than thankful.

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But I am home, and the world looks beautiful from here.

We were blessed to have a white Christmas this year. We haven’t always been so lucky, but somehow it always feels more like Christmas after it has snowed.

My husband, son, and I stayed home this year. The entire day, I didn’t even go outside… but that is okay, I very much enjoyed myself just the same. It has been a rough year this year, and we didn’t have a lot of gifts under the tree – but what we did have was given with love, and was gratefully received.

It is easier on my son to stay home… even on Christmas. He becomes so overwhelmingly uncomfortable when we go places, that he usually just ends up sitting alone (trying to blend in with the furniture) and waiting for it to end. I can understand that. I get that way, too, and have experienced more than my share of social events feeling the same… but I like to do something different for Christmas – just to show that the day is different than any other.

On Christmas Eve, my husband and I went to the candlelight service at our Church. As I missed church last Sunday (my husband was singing out of town, and I was too anxious to drive there and go alone) I was really looking forward to that service – and I was not disappointed. It was amazing! Just so well done, and I was near tears in thankfulness while listening to our Pastor speak. What a wonderful way to start the holiday!

Then on Christmas day, my family decided to take out a puzzle to celebrate the day. My son and I both love puzzles. I find it to be a relaxing way to socialize. I don’t have to talk much. I just have to be there – and even when I am severely anxious, puzzles are one way I can overcome my discomfort and participate.

For my son, I think it is an area where he feels competent. He has amazing spacial awareness. He always has. I bought him his first real puzzle at the age of 2 (he had just turned 2.) It was a 48 piece ‘Dudley the Dragon’ puzzle, which I purchase after his grandmother had told me that his birth dad was doing puzzles by that age.

We got home, and I opened it up for him. I went to do dishes, and was going to help him with the puzzle after – but when I came back out of the kitchen, I found him with his puzzle completed.

He has always been good with puzzles. So it was a really good way for the three of us to spend the day together, and I very much enjoyed myself – in spite of, or perhaps because of, the quiet of the day.

Thankfulness.

It is found in the little things: The quiet moments with family; the snow coming down on the trees; Hobbit puzzles, warm quilts, hot mugs of tea… What a great Christmas!

 

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Autism: All My Fault

It was summertime. I guess I would have been about eight years old. We took a drive – my parents, my brothers, and me.

“Wait in the car,” we were told, as they took my younger brother across the street with them. They came back with a boat, and he came back with an armful of apricots. They sat him in the car, between my older brother and I, while they tied the boat on the roof. “Keep him in the car,” they told us.

I was on the drivers side. He climbed over my older brother, on the passenger side of the car, and forced his way out – though we tried to stop him.

He ran across the street to get an apricot he had dropped. My parents didn’t notice. There was no time to tell them.

He picked up his apricot, and ran back across the street. She came driving around the corner. She didn’t have time to see him, I guess. It was a little, blue car – or at least it remains that way in my mind.

“Why didn’t you keep him in the car,” my father screamed at us. My fault. My brother may die, and it’s all my fault, I thought.

I remember the dent in the silver bumper, where it had struck my brother’s head. The crowds of people that gathered around him. The ambulance that took him and my mother away.

My aunt watched us, as my parents spent the rest of the day in the hospital. We lay under blankets on the pull out sofa bed watching movies, as I remember it. They were home late that night – maybe around midnight. So strange, after such an accident.

My sense of time wasn’t great at that age. One morning, my brother didn’t wake up. We were dropped off at our neighbours house, as he was rushed to the hospital. In my mind, the two were connected. I was in my thirties before I learned otherwise.

He spent a large part of a year in the hospital – my mother there with him, leaving me at home with my father… He nearly died many times. Several times, he had died, when they brought him back to life. A string in his nose, a tube in his stomach, seizures, hallucinations… my fault. I should have kept him in the car. My fault he now has special needs, lives on disability, doesn’t think well… my fault. I should have held onto him.

It was somewhere around the same time. My younger brother was in the hospital again – he had been coughing up blood. My older brother and I were at home with my aunt. I was really, really sick. She gave me grape juice. I threw up all down the hallway – I couldn’t make it to the bathroom. She brought me upstairs to lie in bed. “Do you want Brandy to come with you,” she asked. Brandy was my dog. “No,” I said. I didn’t want her to get sick too.

My dad came home. He had bought me a pink canopy bed (I don’t know why he wasn’t at the hospital with my brother.) He left the door open, as he brought the bed in, and set it up. Then he went to move my Grandpa’s suburban that he had borrowed. He screamed my aunts name. My dog had been under the vehicle. He may have only clipped her tail, but she had a heart attack, and died.

If only I had brought her up with me… my fault. I killed my dog. Bad choice.

When I was in the eighth grade, we had a project for music class on composers. I was doing Beethoven. I had trouble working in the library with all my class there. It was too busy. I did my project at home, using our set of encyclopedias (no internet in those days.)

The next day, we were told the “B” encyclopedia had been stolen. The entire school blamed me – all the kids in my class, all the teachers… I tried to defend myself, and one of the girls in my class said, “my mom said that people who are in denial are usually guilty.” I had no way to prove myself innocent.

After a few days, the encyclopedia was returned (it was that girl who had taken it.) I never so much as received an apology. I knew I hadn’t done it, and felt guilty just the same. I learned then that I had no ability to defend myself. If others decided I was guilty, I would have to pay – even though I was innocent.

Shortly after I told on my dad at the age of fifteen, my parents got a divorce. My mom has been living in poverty, caring for my disabled brother since. When he died – though they had remarried by that point, he left her nothing, so that I wouldn’t end up with any of his money. She lives in poverty. My fault.

So when my kids were taken, and I was accused – I can’t defend myself. I always look guilty. Everything is my fault. Though others tell me the system is broken, I have learned to blame myself… even if just for the fact that I haven’t the ability to defend myself.

When I walk into stores, I feel guilty, though I have not stolen anything – what if they think I did?

When I talk to people, I feel guilty – as if I have hurt them, though we may have never met.

A few years ago, I was painting the siding on my house – alone. I was up on the ladder, in a very precarious position. My husband was out of town, camping (I had to work), and was driving home that day. The ladder shook. In that moment, I was terrified that I would fall and die, or my husband would be in an accident and die (all weekend I had been dreading something) and I was afraid for my son being left all alone.

I prayed so hard that we would be spared, for the sake of my son.

That day, as I came down off the ladder, and went in to read my Facebook, I found a man from my church had been killed when his tractor rolled on top of him. It happened at the same time I had been praying to be spared. My fault. If I hadn’t prayed to be saved, I would have died, and he might have lived.

Unreasonable, but that is how I have been taught to think.

So if you talk to me, or read my words, and think, “she sounds guilty,” know that this is why. I know I can’t defend myself, and much as I try to heal from this, I always feel guilty, for everything (I have learned) is my fault.

 

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Autism: Making Phone Calls

Read the paper, look at the computer… read the paper again – and start shaking. The phone call needed to be made. There really was no way around it, though I searched… but it wasn’t something that could be let go.

The paper said I had been paid. My bank account showed otherwise – so what happened to the money?

Phones. They shouldn’t bring about so much fear, but always they do.

Wasn’t it enough that my heart was racing as my son had to make his own phone call that morning? But no. Now I had to make one, too.

Thankful. That is what I should be feeling, as my disability application got accepted so fast. I was told six months, and the paper came in one. But the money wasn’t there. It said, “paid,” but I hadn’t been paid.

So my overactive imagination started working overtime, and all along the anxiety grew. What if I gave them the wrong bank information? I know I checked it, again, and again, and again – I am compulsive that way. But I could have been wrong. It happens a lot.

If my money ended up in someone else’s account… I could see them having a happy Christmas. It really wasn’t a lot – definitely not enough to live on, or calm that anxiety – but it was a few months back paid, and for someone not expecting it, it would have made an excellent Christmas bonus.

It would have been my fault. I was sure the mistake was mine. They said, “paid,” and I wasn’t.

Still I would have to claim it on my taxes, probably. That is what the paper said.

So we would still be struggling a lot, while someone else was enjoying the money, and I would have to pay taxes on it. So unfair, but still my fault – always my fault… I keep getting it wrong.

Fighting back the tears, I knew what I had to do – call the disability people, and see what went wrong. Stupid, stupid me. Why can’t I do things right for a change?

Sweating, shaking hands. Numb, tingling body. Hard to think. Hard to focus.

What if I make this phone call, and they think I am okay – I know I am not, but they can’t see me. I will be cut off.

Fear. Brokenness. Strong anxiety – will this medication never work?

She put me on hold as she left to find out what happened.

The clock ticks in the background. The minutes pass by. My fear grows. Trouble.

Finally she comes back on. “The wording was bad,” she says, “the payment will come in January.”

“Thank you,” I reply, and hang up the phone. Not my mistake. I should be able to calm down now.

Eight hours later, my husband comes home from work. I go to cut his hair, and my hands are still shaking. Badly. The answer was good. No need to be afraid. Yet still I shake. Still my body is numb. Still I am struggling, and fighting a meltdown – over a five minute phone call (most of which was spent on hold.) Five minutes:Eight hours.

And still I beat myself up as if with a little effort on my part, I should be able to live in their world.

 

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Autism: Living, Thinking, Breathing

Here. Right here in this moment, I am breathing. Focus on my breath – in and out, in and out… over and over for a lifetime.

Within my mind, I have thoughts. Thought of the future, thoughts of the past, thoughts of love, and pain, regret, joy… emotions, and thoughts that are all my own.

Amazing!

How is it that I can be here, in this place, in this time, on this world, surrounded by these people – living, breathing, thinking, knowing… how is it possible?

Wishing, desiring, striving, failing, laughing, crying… how?

Every once in a while, I stop – okay, more often than that… it just grabs a hold of me, and suddenly I am focused on all that I am, right here in this place, and I am overcome.

How is it my eyes work to see – the snow on the treetops, the plants at my window, walls, ceilings, floors… how is it I am here in this place, seeing and knowing?

Amazing.

My son is outside shoveling the driveway, the washing machine is cleaning my clothes, the radiant oil heater is ticking as it heats up… how can I hear these things? How do these things exist?

To taste the foods that I eat. To smell the fabric softener (and be calmed by the scent.) To feel the keys of the keyboard beneath my fingertips as I type… to know how to type.

To learn, and grow, and do, and be – and find thankfulness, or pain, in all I have known… how is this possible?

Every once in a while – or every few days – I am suddenly fully present in this very moment, and I am overcome.

Fearfully and wonderfully made.

Amazing.

I hope all of you have a very Merry Christmas, full of joy, and laughter, love, and… now. I hope that you see now for all that it is. Amazing.

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Autism: Unexpected Joy

The day started out as Mondays have for the past few weeks. My husband has the day off, and so it has become errand day… well, become is a bit strong, as he has had this routine for a long time. It is just that I am now joining him in it, since we are down to one vehicle, and it is the one day a week that I can get out.

Not that I want to go out, but there are things to be done, and since I have to go out and do them, it is nice that he is there to do the driving.

Only the day didn’t go as expected. Things can go wrong, and they usually do… I think that is the saying, anyway. Today it was the van.

The battery has been giving my husband trouble over the past few days. The battery itself is only a year or two old, so we knew that wasn’t likely. He charged it overnight, and planned to take it in this afternoon – only the trouble came sooner.

We stopped in to order my prescription, then drove up the street to the library, and to do some shopping. On the way to the library, we stopped in at the mechanics, and made the appointment for the early afternoon as they needed to look around for the part.

And then, upon driving out from the library, the short distance to the pharmacist, we could both feel and hear the power leaving the van. Trouble. My husband kept the van running, as I went into the (busy, crowded, cringing, shaking, anxious) store (it is 4 days to Christmas, after all.)

We knew on leaving that we would have to just drop it off at the mechanics, and walk into town while they worked on it. The mechanics was practically across the street – only we never made it that far. The van died coming up to the lights – a very bad location to break down, but it isn’t like we had an option.

He got out of the van, and was going to walk to the mechanics to see if we could get towed (alone in a broken down van, with streams of cars, upset, swerving around me… anxious, shaking, stressed, want to go home, don’t want to be here, ready to cry… bad.) At that point, our backyard neighbour passed us, and offered to boost our van.

They drove up the street in order to turn around and face us – only as they drove up the street, a vehicle behind us swerved to get around us, and hit another vehicle. They stopped and got out (thereby blocking both lanes right at the light) and the lineup of vehicles behind them started driving into the incoming lane in order to get out.

To make a long story short, it was a very stressful time for me. We got our boost, and barely made it to the mechanics. And then we started walking into town… and that is when the day that could have/should have/probably would have left me with a pounding headache, and no reserves to fight off a meltdown turned into a beautiful day.

At it was at least a 20 minute walk to town, we decided to stop in along the way and check out wood burning stoves. We didn’t buy, but we did get the information, and my husband and I both left excited about the possibility of investing in a wood burning stove at some point.

We then went to the mall restaurant for lunch. I have never been there before, and change is really hard for me. It took a while to choose, but they had a similar meal to what I order at our ‘regular’ (we may go there once or twice a year) restaurant. It was really good.

After that, we went to see the model train display in the mall – which was very interesting – looked at the fish in the indoor pond, and sat reading in the library, before walking back to get our van.

It was expensive. For a time when our income is so low, that is a challenge, but the alternator was dead, and had to be replaced. But the time I spent with my husband because of this issue was priceless. I can hardly remember the last time we had such a day together – likely in the summer while we were camping.

And that time – that wonderful time, in a busy, crowded mall, that usually has me stressed and exhausted in minutes – made up for all of the challenges I experienced today, and I was thankful… truly thankful, to have our day turn out that way.

 

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