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Monthly Archives: June 2016

Autism: Vehicle Trouble

I woke up this morning to the sound of my husband calling into work. The van wouldn’t start, and he had been out there for about 20 minutes already trying to get it to go. He has had trouble with the starter for a few weeks now, but this is the longest it has taken so far to get it working. I say ‘he’ because when the vehicle is acting up, I won’t use it.

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Yet even when it was his issue to deal with, I could feel my heart start to race. When I was working, the van was mine to use. He took the car, which was standard… I can drive standard. He taught me before we were married, when he wanted to give me his car. But I don’t like it.

I get nervous driving to begin with. It more has to do with other drivers, and detours, than fear over my own driving – but when it comes to standard, it just makes everything worse. The biggest challenge for me in driving standard is stopping on hills. For the first vehicle my husband gave me, it would hold on hills. Still I was scared. People stop too close behind. It was like the feeling of when people stand too close, but so much worse. All of the standard vehicles we have had since, have rolled on hills before moving forward.

Oh, I know! Use the parking break… but then I have to think of having my foot on the clutch, my foot on the brake, my hand on the gear, and moving over to the gas, and removing the brake – all the while, watching what everyone else was doing (and still worrying about how close the person was behind me.) I could do it, but it was all too much for my anxious heart.

So I drove the van, and he drove the car, and as long as everything went according to plan, all was fine.

We always get used vehicles. Not just used, but old. I am okay with that – I am a very… thrifty person, and the thought of spending $30,000 on a new vehicle – or even $10,000 on a sort of new vehicle, is well beyond what my economical mind can agree to. We bought this van for $3500 8 years ago, and it has been good to us.

However, on a day like today, where the van wouldn’t start… while he sat trying to turn the engine for twenty minutes, my heart would have been racing at an increasing pace, and I would have been in tears by the time he called into work. And there would have been another struggle – the phone. I hate phones. I don’t think I can emphasize that enough.

Calling in to work to say I would be late – even if it wasn’t my fault… it would have been like failure to me, who was always at least 15 minutes early, and often 30. When I did get to work, I would have gone in shame, and it would have made it that much harder to go back each day.

If the vehicle then didn’t start, I would have had to call for help, or for a ride, or something. If my husband wasn’t there to help, I would have frozen up – and probably told work I couldn’t come in at all (though I never missed, even for sickness, except that week my back was out and I couldn’t even stand up no matter how hard I tried.)

It isn’t that I wouldn’t know what to do – but like driving a standard vehicle, it would have been too much for me. Too much.

So once again this morning, as I listened to my husband trying to start the van, I was thankful. Thankful that at this time in my life I rarely have to leave home – for out there, there are too many things I can’t predict, and I can’t control, and that is all too much for me.

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Autism: Very High-Functioning

“You must be very high functioning,” she told me. Should I have taken that as a compliment? I didn’t say much, only that the diagnosis was Aspergers, yet even the next day my heart is racing as I think of it. High functioning doesn’t mean easier, I wanted to tell her, but we only had a couple of minutes. Plus it is likely she didn’t want to hear.

Maybe high functioning is easier on the parents. Maybe high functioning is easier on the schools. Maybe. I don’t deny that raising, or caring for, “low functioning” autistic people would be a strong challenge, but…

There are many things about being “high-functioning” that I feel are even harder than being “low-functioning.” Especially for the person who has to live with it.

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Most of the people I have known who are low-functioning seem to be more content with themselves, and with other people. Overwhelmed? Yes. Quick to fall apart? Okay. Inflexible/unable to change or alter their course? I won’t deny it. But when they come through their (very real) struggle, it seems to me that they are able to move on.

Yes, they may have left a scene of destruction in their midst, and the people around them may be exhausted – but do they relive that moment of their weakness for years to come? Do they beat themselves up for how “broken” they are? Are they filled with fear and shame every time they go into public for the memory of failures of the past?

Perhaps they do, but I still don’t think being “high-functioning” is easier.

Her response, for example. I had a cousin and a brother who were both noticeably “handicapped.” No one blamed them for struggles in school (in fact, their education was build around their disabilities.) No one blamed them when they couldn’t get a job, or keep a job, or behaved or spoke awkwardly. No one expected more of them than they could give, and all they could give was seen as a blessing – not a failure.

Those same people who cheered them on, had expectations of me that I always failed to meet. Over and over again I failed these people I loved so much until I was so ashamed of my failure, I literally ran away across the country, so I wouldn’t feel that shame (though I carried it with me just the same.) It wasn’t even that they told me of their disappointment – only that I knew they expected so much of me, and no matter how hard I tried, I couldn’t meet it.

What they don’t realize about being “high-functioning” is that the disability is still so strong – only we can see that difference, and over time we learn to put all our effort into fitting it. But we never do fit in, and that pretense never becomes natural, and all of that effort to maintain that act is exhausting. And then above all of that, we continue to fail to meet their expectations, and it hurts so bad – and it fills us with fear, and shame, and doubt, and…

It all becomes too much, until we just can’t keep it up anymore. And they blame us for our failure. And we blame ourselves for that failure. And we feel it all – their disappointment, and our shame, and our knowledge that no matter how hard we try, and what we put into it, we can never succeed.

And maybe, just maybe, if they could see our struggle as they see the struggle of those who are “low-functioning” they wouldn’t be so quick to think it was easier. And maybe, instead of being disappointed at our failure to meet their expectations, they would cheer us on for trying so very hard to live in their world.

This woman has always been kind to me. I am sure she meant well. She has a disabled son… a low-functioning disabled son… and she cheers him on, as she should. She has also known me at work, and how I did there, and felt I was a good employee. So I understand that she doesn’t understand how very hard it is to be a high-functioning autistic person, or why I am no longer working, and have settled on disability (or why I won’t push my son to go out into the world that terrifies him, to overcome the fears that plague us both.)

 

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Autism: Lost

I remember writing it. I know it was completed. I even remember checking the spelling, copying it, pasting it, and scheduling it for publication. Yet for all of that, the post has been lost. I don’t know how, and I don’t know why, but after two days of searching through all 301 of my posts, I am now convinced that it is gone.

And while I was calm yesterday, I am anxious today because of it. It seems so… unfair. Perhaps it was my fault. Perhaps I didn’t actually post it to my blog. But I remember. I remember that when I was finished, it said that it was scheduled for release in 21 days.

I thought, “Good. Now I am far enough ahead that I will be able to keep up despite my summer vacation.” I can’t write when I am away at the lake because there is no internet there. There is no electricity there save a few solar panels to provide light at night, and charge up cellphones and such – not enough to keep my laptop going, anyway. So after seeing that I was three weeks ahead in posting, I felt relieved.

So because I wrote that on Tuesday, and because I was three weeks ahead, I didn’t feel a need to write on Wednesday or Thursday. Only when I went to save my post yesterday, it said that it was scheduled for release in something like 17 days. That is when I started looking for it.

I remember that I hadn’t intended to write that morning, but that I went downstairs to try and organize the “blue room.” I call it that because I painted the floors blue some years ago. When we moved in, it was a workshop. When I had the daycare, it was the “food room.” (we also did crafts, baking, and science experiments in there.) When I had my children, we put in a door, and it was a bedroom. In the winters, I would move my rabbits and guinea pigs inside, and it would be more of a barn. But lately we have been using it for storage, and it is the ‘blue room.’

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Although I have organized it in the past, it continues to become messy and cluttered. Everything throughout the house that I don’t know what to do with gets brought down there. And that mess weighs on me as all mess and clutter do.

Tuesday morning I woke up early (for me) and decided it was a good day to organize. Fifteen minutes later, I was so overwhelmed I could hardly function. Not only was the mess too much for me to deal with, but along the side of the wall under the windows, the concrete is turning to piles of powder. This has been happening for a few years now, and it reminds me of how everything falls apart, and no matter how hard I try, I can’t make things right.

I have been expressing my concern to my husband over this since I first noticed it. He talked to a couple of people who thought it was likely the drain pipes around the house needed to be flushed out. So we did – and he forgot – and meanwhile the concrete keeps turning to powder, and in my head I hear, “my house is falling apart around me,” and it makes me want to cry… no. It does make me cry. I can’t handle the corruption of the world, whether water damage in a basement, or people who do evil things.

It is all too much for me.

There are times I just want it all to wash away, and to start over. Start new. Start with a life, and a house, and dreams, that are not falling apart around me. But then so much would be lost in starting over, and that would break my heart even more.

And then my post is lost, and I think, “will nothing I do ever work out well?” All is broken. All is failing. All is… lost. One thing reminds me of another, and something tiny like a lost post can trigger pain over all I have lost, and it all seems so unfair.

And that unfairness is overwhelming, and where I come wanting to say I am doing well, instead I fall apart. Again.

 

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Autism: A Year After Diagnosis

June 2nd, 2016

A year from the date when I got my diagnosis of Aspergers. A year from the time when I went beyond talking about Autism with my son, and began to share it with others. A year of having my heart pound as I shared this ‘secret’ in fear of how others would respond.

And they all accepted. The only question on my diagnosis arose from my mother who said, “We took you to the doctors. How is it they didn’t see it?” It wasn’t that she didn’t believe, but that she wondered how it had been missed.

Autism wasn’t something being diagnosed when I was in school, however, and Autism in females was even lesser known.

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For me, this diagnosis gave… validity??? to the ‘difference’ I had felt all of my life. When I was a child – and I have since read that I was not the only one – I literally thought I had come from another planet. It wasn’t just that I felt different, I was convinced that I was different, and that the only explanation to this was that someone had abandoned me here.

I spent many nights of my childhood begging for them to come back and get me, and bring me ‘home.’

My diagnosis gave me words that I can use to express to others why I am so different, and why I can’t be like them, and why I so often fail at even the things they are standing behind me rooting for me to succeed in.

Being diagnosed with Autism, for me, was like having the chains that had bound me all of my life suddenly disintegrate. It isn’t that my diagnosis changed the person that I was, but instead it provided me with the freedom to shed the mask I had been unsuccessfully wearing much of my life, and begin to allow my ‘real self’ to shine through.

It was a strong wall I had built around myself, though. A wall to protect me from those who would attack, and torment, and constantly remind me of how I failed to live up to society’s expectations of me (even in gentle, friendly voices.) A wall that I could actually see, though could never break through on my own.

Likely it will take a while to get that wall down, and likely there will still be people on the other side that will blame me for not being ‘like them.’ But with my diagnosis, the light has started to shine through. Sometimes I think, “Maybe I can survive out there. Maybe I can be myself, and still be accepted.”

And whether it takes months, or years, or the rest of my life – I know that is the way I am supposed to go. Take down the wall, and let people in.

And for all of these reasons and more, I am grateful for, and not ashamed of, my Autism diagnosis.

 

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Autism: The Pain That Never Ends

Though I have only been awake for a few hours, it has already been a rough day. It was rough as I awoke, and while in the past few days, I have awoken to similar thoughts, the rest of the week I quickly got past it. Today has been different.

I conclude that this thought, this pain, this panic, will never truly heal in this lifetime. There is a hole that cannot be filled, and a pain that cannot be reconciled. Though I have days where I find joy, I have never truly forgotten – and I only have to look to my dreams, and the prayer I begin before I even wake up, to know how deeply it affects me still.

I was in a room. A long room filled along one wall with shelves that had numerous toys, games, puzzles, and books. In the dream, I thought it was a room from a house that I used to live in. Now that I am awake, I am pretty sure it was one of the preschool rooms in my church. It doesn’t matter, really.

In my arms was my baby. My angel. Beside me was a friend, and this friend had decided that she would adopt this child in my arms, since I was unable to. She asked me if this was okay, and though it pained me, I agreed with her. The child would have a good home, and at least I would know her. At least I would see her.

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For days, weeks, months, in the dream, I spent much of my time in my friend’s apartment (this room where I used to live) with this child who was, yet wasn’t mine. In the beginning, the baby called me, ‘Mama.’ As time went by, and the adoption was going through, she began to call my friend ‘Mama.’ That hurt, too. It hurt a lot! But still I was in the life of my baby, and it had to be enough.

And then I found out that this friend and her husband were trying to buy a condo, and would be taking ‘my baby’ away from me. It isn’t that they intended to take her away, but it was a really nice place, in a good neighbourhood, and it would be best for the child. Besides, this friend and her husband had always wanted to live there, and now they had the opportunity.

It didn’t matter to me that it was a beautiful condo, in a nice neighbourhood. Where they were living was next to me. The apartment was fine, and I never felt unsafe there. What mattered was that they were taking ‘my baby’ from me.

At the end of the dream, I was walking through this condo, holding ‘my baby,’ when my friend found me. She said, “you didn’t even tell me where you were going, you just disappeared.” I needed to see where my daughter would be living, and it was a beautiful home – new kitchen, hardwood floors, gas fireplace in the sunken living room… beautiful.

But nothing could convince my heart and mind that taking my child away from me was worth… whatever they were giving to her.

And I awoke crying, “Please bring my babies back to me,” as if, even six and a half years later, it is still some nightmare that I can wake up from. “Please don’t take them away.” And it has been the same for many days. The dreams are always different. The people, the places, the story… always different. But the message is always the same – my babies were taken away, and I want them back.

How could anyone have thought this would be better for me than raising the children, challenging as they were.

The pain that never ends. The tears that never dry up. The trauma that will never be overcome. The hole that can never be filled. Not in this lifetime, anyway. Is it any wonder it is hard to keep going most days?

*This post was written and scheduled, as were many along with it, before my dog died.  I have been rearranging my scheduled posts, to post the ones about my dog during the time I have been struggling with that loss.

 

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Autism: Broken Routines

The routines are hard. Routines are what bring me comfort and stability in an unpredictable world, but now my routines are broken, and that in itself brings fear and pain. Even the routines that I wasn’t often part of.

  • The house is too quiet in the early mornings, even when my husband is moving around. No little dog barking, or dancing around, asking for his walk, or for his food. I thought I slept through it most of the time, but the silence now wakes me with a feeling of emptiness. There was comfort in the routine that helped me to sleep.
  • When my husband opens the door to leave for work, there is no dog running down the hallway, jumping up on the bed to see me as I begin to get up (there is no point to getting up, so I get dressed, brush my teeth, go back to bed – and notice his absence.)
  • The dogs barking outside are not mine. I don’t need to check on him, or call him in. I wish it was my dog barking, disturbing the neighbours. But he never will again. Not this dog. Even that hurts.
  • When I walk into my bedroom multiple times a day, there is no little face peering up at me from my pillow, where he used to pull back the blankets to sleep during the day. I keep expecting him to be there.
  • We have a clock that has different bird sounds to mark each hour. The 5pm birds sing, and my heart jumps, but there is no dog dancing around, asking to be fed. The 5pm birds were his. They mark his absence now.
  • While I am making supper, there is no dog asking to be let out so he can “watch for daddy.”
  • No dog to beg for cheese whenever someone takes it from the fridge.
  • When my husband asks me after supper if I want tea, it is like an arrow is being shot through my heart. The word hurts, and when I drink it, the tears start to fall. There is no dog trying so hard to wait patiently for his walk.
  • There is no dog sneezing – I have allergies, and very early on in our time with him, he learned to sneeze to ask for something (“Do you want to go for an… achoo, achoo, achoo… walk?”) I miss his sneezing.
  • When my tea is done, I fall apart, and go to bed in tears – though it is only 7:30pm. I should be walking, but there is no dog. No point. The pain is deep, and hard to shake.
  • Just around 9pm, my husband opens the door to check for any cats that might be outside. That is when my dog would come running down the hallway to find me. There is no dog to run to me now.
  • And when he came, I would brush his teeth (and give him his medicine for the last month or so) and he would try so hard to please me, though he hated it. Horrible cherry flavoured medicine, yet he would come, and he would sit, and he would open his mouth – then pull away, because it was so bad, then try so hard to stay just to please me. Just to please me. And he would lick the toothbrush after his teeth were done, because that tasted good, even if the brushing was hard.
  • And then he would get a bone, and he loved the days when he got a new bone, and would run to the kitchen at the words, and sit ‘nice’ waiting for it.
  • And he loved the game I played with him once he had the bone, where I would try and get it from him, and hide it – then kiss him on the nose when he growled lightly (the only time he did) when he was done with the game, to let him chew.
  • I have no dog to kiss. No dog to feed. No dog to walk. No dog to love.
  • During the night when I got up to use the bathroom, he would always sit up worried that I would trip on him, though I never did. I would rub his head on the way there and back, and tell him I loved him. There is no dog to trip on, and now I worry, because I can’t see him. I always could before. I miss him so much.

With the routines that brought me comfort, each one now fills me with an ache so strong I don’t want to live. I know this pain. I have been here before. I know this will be my life for many days, weeks, months even – and when I find it getting easier, that will bring a pain of its own.

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