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Autism: Christmas 2017 part 2

Christmas day itself went pretty well. My husband bought cat toys for my son and I (strange, maybe, but for us it was great!) The cats were delighted, and were running all over the place chasing their toys. So much fun for us to watch. Two weeks later and they still spend a lot of time playing with those toys, and Finn even brings hers up to the table with her to hide from the others when she isn’t playing.

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We also made a puzzle. Last year we spend 5 days on a 1000 piece puzzle only to have Finn pee on it on the fifth day (she decided to move from her bedroom to the dining room where we had the puzzle – and I didn’t understand in time to transfer her litter box with her.) Disgusting, and very frustrating.

So this year we did a 300 piece puzzle. It was challenging enough to get our minds working, but easy enough that we could complete it in a few hours. Perfect! And for three strong introverts, that was about as much time as we could happily spend together before needing our space.

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My husband had that week off of work, and a few more times we got together to make other puzzles of the same size. I would say that was good.

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But the depression still had a strong hold on me, and by December 30th, I was as low as I’ve been – and nothing especial even happened save that my husband gave away something I wanted – even after I protested and said I still wanted it… that hurt. It hurt a lot – but the depression was already there before that happened.

Plus, even though that was hard on me, it couldn’t possibly compare to, say, the day we had our children taken. Or the day my dog died. Or any number of truly horrible days that I have lived through.

Yet the pain was bad enough that I honestly didn’t want to live through it. And I think that maybe the only reason I did get through it was that in that level of depression I had a crisis of faith (which happens when my depression or anxiety get so bad) in which I was convinced that God didn’t want me (no one else did after all) – so if I died then it would have sealed my fate, and I would have been in hell forever.

I guess I should be thankful for that.

The very idea of spending eternity separate from God is more than I can bear – and yet for that fear I have to bear the pain of that fear to ensure I don’t spend eternity separate from God. I suppose that those who don’t share my faith couldn’t possibly understand this, and those who do share my faith, but don’t experience the shame and despair that allow these spiritual attacks (I never doubt that God exists, or that He is good – only that He wants me, or that I am actually saved)

It was, maybe, January 2nd before the depression started to lift. Even then, a week later, I am still in a battle. Some days… some months… some years, even, it is tough. Tough to live well. Tough to be in this world. Just… hard.

 

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Autism: I Long For The End

How can my life be fixed?

How can I move forward when the past continues to cry out for redemption?

Broken as I am; standing on a fine line between sanity and insanity; how can anything good, or true, or righteous come out of my existence?

I dream of things that are wrong, or impossible… and when I wake, I still desire them in part.

Even in longing to belong to God, I still desire things which God has determined are not right for me. In the battle between flesh and spirit, the flesh frequently lays the stronger claim.

“Oh wretched (person) that I am, who will deliver me from this body of death?” (Romans 7:24)

I am filled with a restlessness and a discontent which nothing in this evil, broken world can satisfy; and I long for escape.

Where others find joy and connection, I see a world filled with pain and despair, and feel powerless to help at all. And evil as I know I am, this overpowering desire to ease the pain and suffering (which I have carried for all of my life) only breaks me further as I come to see that my presence, and my very best attempts only serve to cause more pain.

Who am I?

Why am I here?

Will I ever make it home?

What more will I cost others along the way in my weakened attempts to serve some greater purpose, and remove just a little bit of the hurt in this broken world?

Some days I long for the end, for… “the end is where we begin,” (Captain Jack Harkness – Torchwood)

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Autism: Like Losing My Children All Over Again

The week my mom left was an especially difficult time for me. It is so hard for my mind to understand the abstract nature of this world – such that, “my mom is gone; will I see her again; and… are my memories of yesterday(s) real?”

Above the difficulty I was having with her departure, I also happened to be reading a book that led me to question my faith. It wasn’t so much in belief, but in “faith without works is dead.” So I was overflowing with guilt and shame, regret, and fear that since I seem to fail at everything. Does this then mean I won’t have ‘works’ to show my faith is alive, and therefore God will reject me?

That same week, I must have been triggered by something (perhaps the dream in which I was trying to bring my children home,) for I was emotionally re-living the loss of my (foster) children, and the attack I had experienced at that time much like it was occurring again in the present time. My pastor says that the emotional receptors of the brain don’t understand time. Therefore, when a memory is triggered from something that was emotional (and that time in my life was very much so) it feels as if we are experiencing it again. Therefore the saying “Time will heal,” is not accurate.

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I tend to agree with him on that one, as it is certainly true for me. I frequently relive traumatic times in my life when memories are triggered, and it really hurts as badly now as it did then. I may not be living it every moment of every day as I did when it happened – but the pain is just as intense, and the hurt just as strong, as it was in those days.

And then I had another dream. And though the dream was extremely unlikely to be a subconscious reflection of reality; and though he has never given me any reason to believe this might be a possibility; and though I have not been suspicious, or jealous, or anything in our relationship – the dream still had a very strong impact on me.

In the dream, my husband was confessing to cheating on me continuously, and was mocking me for being upset, and for being too stupid to know he didn’t want our marriage to last.

It wasn’t even a very long dream, and when I woke up, while I still acknowledged such a thing to be extremely unlikely – emotionally I was aching, and responding to my husband as if it were true. I didn’t speak to him of this – it was a particularly ridiculous dream; yet perhaps if I had I would have been able to heal, and not fall apart in ways he couldn’t understand (not knowing where such things were coming from.)

It has been hard enough living with this idea that he doesn’t want me battling in my mind for several years – but to have this added to my mind: that he doesn’t want me because he has someone else (even if I know it to be untrue, and only the result of one nightmare) brought me to a certainty that he doesn’t love me, and doesn’t even want me around.

And while it was unfair to him, since it had nothing to do with his actions, and everything to do with my dream; I still responded to him as if it were truth – and it hurt. It really, really hurt. And he had no idea.

So he fed this belief he didn’t know I had, from a source fully outside of reality, by responding to my discussions about not being able to go to the lake since I had no solution for keeping my girls safe with (what appeared to me) indifference – and as if he really didn’t want me to go with him. And then he got my gloves wet, and I fell apart, and it was like…

It was like losing my children all over again.

 

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Autism: Please Don`t Criticize

Aside from the couple of days it rained each week, I have spent most of the past two weeks out in the garden… Well, not exactly most, but for me, something I focus on for 2-3 hours each day is most. That is about as long as I can be active, when my energy is high, without burning out.

The sun has been shining, and my girls have thoroughly enjoyed every minute spent out there. They are even learning to bark less – which is huge! Now, instead of barking from the moment they sense someone coming along the road, until they are out of sight in the other direction, for the most part they are only barking a couple of times at each end of our yard.

Of course, they still chase them from one end to the other (often doing circles and figure eights since they are so much faster than the people waling) but they are quiet for the most part. I am really pleased with their progress since just a couple of weeks ago I was so worried about what the neighbours would think of them, I was considering blocking off the entire stucco wire fence with landscape fabric (probably not the best idea, but the cheapest I could – or I should say, my husband could – come up with.)

A couple of different people who walked by, and saw me in the garden, asked me if I was planting seeds already. From their words I learned that it was too early to be planting in our climate, and I was thankful that was not in fact what I was doing.

Last year, along a section of our fence line, I placed a layer of newspapers and cardboard. On top of this, I put a shallow layer of top soil (it used a lot of bags for just a small amount) and planted wildflowers. Despite how shallow the soil was, the wildflowers grew. They were really pretty. I suppose I could have left that to see how many would regrow this year (from the sprouts that came up this spring, I would assume a lot.)

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That was not the plan, though. Whether I decided to re-seed it with wildflowers, or try to grow something else there, the plan was to go deeper (since the grass would have been mostly killed after being covered so long.) So I have been digging, and pulling weeds, and vines (which seem to be attached to the grass, but are a real issue in the soil) and taking out insects (though struggling with an inability to kill them even though I am pretty sure they are the type that would be bad for the garden) and tossing the many worms back in (with rubber work gloves, of course.)

And that is what I was doing both times the people came by and asked if I was planting seeds already!

I am really glad that isn’t what I was doing. “No. I am just pulling out the weeds and grass,” I told them, and they were satisfied with the answer. Had I been planting seeds, however (as a few say to plant in early April) I would have been so embarrassed by their question that I would have struggled to return to the garden for the rest of the year – and I would have had another meltdown after full of the thought of how much I hate having neighbours.

Maybe it would have been a mistake to plant this early. From their words, I guess it would have been. But it would have been my mistake – and I need to be allowed to make them; on my own, and without comment from other people. I can learn from my mistakes. In fact, I learn best from my mistakes – only all I learn from my mistakes when others comment on me is that I am a failure.

I know I am supposed to be able to learn from criticism. I know it. But I am filled with such shame from the words of others – and for good reason, for I have had way more than my fair share – that all it does is shuts me down, and makes me afraid to try again.

So I am really thankful that what I was doing was something they approved of – for I really have been enjoying my time out there, and would hate to have that taken away.

 

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Autism: Mea Culpa

On Christmas day my son and I opened our presents from my husband, and were pleased with the chocolates and Thomas Kinkade puzzles he had got us. There is very little that we all have in common other than being introverts who enjoy spending time on our own things. Puzzles are something that we all love to do, and can do together. It was a good gift.

My puzzle was a ten-in-one, with the largest puzzles containing 500 pieces. My son’s was a 1000 piece puzzle of a cottage, lighthouse, and water. We started on that one, for the only way we would get it done was to work on it over the Christmas holidays.

We started it Christmas day, and worked on it at times throughout the next five days. We were doing pretty good – it was a hard puzzle after all. My son was getting the sky done (he often chooses the harder parts, for he is amazingly good at puzzles; always has been.) My husband and I were working on the house and trees, for it was easier for us to find the pieces.

As I said, things were going well.

For a bit of background information, a little while before Christmas we had bought cat grass to stop my cats from eating my avocado trees. When it sprouted, we put it on the table by the dining room window, since the one cat especially had been spending a lot of time there. They liked the cat grass, although the tiny plastic container that was provided, along with the peat moss, did not actually make a good place for the grass to grow – the cats would chew the grass, the peat moss would lift up, and the container would fall over.

I put it in a ceramic container, and it was better, but then I went over to the table to find Finn, our Siamese, had peed on the table. She had never done that before (she did have a preference for rugs as a protest whenever the weather got to bad to go outside, but the rugs had been removed.) My guess was that the grass on the table confused her to thinking it was ‘just like’ being outside (despite the fact that the container of grass was smaller than a tub of margarine.)

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I cleaned it up, and moved the grass to another spot off the table, and the problem didn’t repeat itself.

Enter in day five of puzzle making. My son had been working on it in the morning, and things were dry then. I went over closer to lunch time, and the box with the sky pieces in it were all wet. Finn! Sure enough, the cat grass was right next to the box of sky pieces (my husband having placed it there to get into the freezer on top of which the grass had been moved, and he forgot to put it back after.)

My son’s Christmas present. Five days of work. Time with my family. All destroyed in one mistake.

My husband was out when this happened. My son was in the basement on his computer. I was the one who found it. I was the one who had to tell them. I was the one who had to figure out what to do (not that there really was an option, but in my feelings of guilt and shame, I could not think straight.)

Logically, I know this wasn’t my fault. Logically, I can see that in most things it is not my fault; not fully my fault, or at least not only my fault. The thing is, though, I do not often function from a logical standpoint. All things stem from my heart, and my heart condemns me for everything that goes wrong in everyone’s life – even if I had nothing at all to do with it, or wasn’t even around when it happened.

Mea Culpa: I am at fault. Always. In everything. As if my very existence means ruin for the rest of the world. Such shame… such a heavy weight of shame I have carried since early childhood.

And people respond to this look of guilt in me as if I must be truly guilty. I understand that. I do. But I wish they would understand that just because I look guilty, feel guilty, seem guilty… doesn’t mean I actually am. It is hard to defend myself when my heart condemns me for everything.

 

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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: Mother’s Day

For years this has been a difficult day for me – like Father’s Day used to be while I was growing up. I could celebrate my Grandfather. He was a very positive influence on my life, and I loved him dearly. However, I was obligated to celebrate my father, and he was not.

It wasn’t that I didn’t want to do things with him. When we were out, my father was a lot of fun. He was even easy to talk to – and that is a big deal for a person who struggles to talk. But when I went to get a card, they always said stuff like, “the best father,” or “I am so lucky to have a father like you,” and that wasn’t true.

Even though he was fun, and easy to talk to, he was also manipulative, and would later use those things he learned against me. I don’t know why I shared with him as long as I did. So “lucky,” was not the word. And it isn’t like I could (or even wanted to) get him a card that said something like, “to a horrible father, who has his good moments,” or something. No. The cards were full of lies, and I just wished the day would pass us by.

Even that kind of card wouldn’t have been accurate. More like, “to a father who confused me, and made it hard to trust people.” For most of the time I didn’t hate him. I hated what he asked me to do – but then I blamed myself.

Anyway, back to Mother’s Day. How can I celebrate Mother’s Day, when it reminds me more of the children that were taken, then the one who was left? I always feel such shame in asking to celebrate this, as “I lost my kids,” keeps ringing at the back of my mind (or, well, not so far back, really.) So how can I say to my husband and son who are left, “come, let’s celebrate me, today!”

Maybe (and I have been told this often enough it must be common opinion) people don’t think of my loss in the same way I do. “The ministry was wrong,” they tell me. “You didn’t lose your children. You failed to adopt. That is all.” But in my heart and mind, I have lost my children, and that pain makes Mother’s Day especially hard for me.

“Who here is a mother,” they ask, and I timidly raise my hand. I have my son. I still have my son. But for a person who dreamed all her life of having five children, had four, and only has one adult child remaining – well… I am not what I thought I would be. And this day reminds me of that failure.

And then they speak of those who wanted to be a mother, but couldn’t have children. I think, “that is me,” but then, I did have one son… but then I had four, and now? And they speak of those whose children died, or those who as adults turned away, and I feel that pain. But mine were taken. They are still here. They still live. But I don’t know them anymore.

I walk away from church feeling sad, and wondering how I could possibly ask my family to celebrate me. After all, I lost my children, and if you “mess up raising your children, nothing else you do matters very much.” And I realize that my shame over this is not past, and I feel again my fear over the world that has such power to decide.

And in my ache, I hear in my mind, “I wish I could have children.” And I realize, though I am nearly too old now for that to be a possibility, it is still what I long for. No matter how much I try to tell myself I am okay with a future without children, I am not. Not really.

So we drive home, and I walk in my door, and I am greeted by my dog and one of my cats. They look up at me, and in their eyes I see that I am still needed. I am still wanted. It may not be everything, but I am still ‘mother’ to them, and that at least is something.

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Autism: The Standard of Success

I am trying really hard to avoid my obsessions, and write about different things. I try to remind myself that while my mind won’t let go, that doesn’t mean I have to continue to share that obsession with others – and that not sharing (I am, of course, talking about the loss of my grandmother at this time) does not in any way lessen how I feel about such things.

Instead I wanted to write about finding small successes in a world in which I often feel I am failing. When I try to do what others do – no matter how much I want to do it – I fail. Every time. And I have a lifetime of experiences that testify to that fact. I have grown over the years – especially the years since I have lived on my own – to feel such shame and discouragement from the things that I cannot do.

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It isn’t that I don’t try, push myself, or work to learn better ways to do things… in fact, I tend to put so much of myself into these things, that very likely I try more than most, even if the results don’t appear that way.

At this time, I am trying not to feel ashamed, or that I am a failure for having been taken off of work and put on disability. I have come to understand the wisdom in their decisions, and I know they were right to do it. I know that if I had kept going as I was, I would have failed, even at that job I did well, due to the severe anxiety I was already experiencing when they took me off. I know that I wasn’t functioning well – but I was raised to work hard, with no excuses. I was taught that if a person is willing to push themselves, they will overcome – and that anyone who doesn’t is a failure.

Only try as I might, I never was able to overcome – and I feel a lot of pain, depression, and anxiety over that fact.

But since I have no choice at this time but to be home (and am finding it works well in helping me to find “calm”) I am also learning what success looks like for me – and though it is not what other people do, I am learning to ease up on myself, and remind myself that I have many struggles that others don’t experience.

So what does success look like for me? I have a list – a small list – of activities that I want to complete every day. This is my routine. I have found that as long as I can make it through my list, I am able to end my days feeling content over what I have accomplished.

True, it is a much lower standard than I used to have for myself – but then, I was always burnt out, always felt I was failing, and always felt I wasn’t good enough. Now? As I said, it isn’t what others do, but…

I don’t have a time frame for my activities. I don’t even have a minimum amount of time to spend on these activities. But I do have my list:

  • walk with my son if he goes that morning (or do some other exercise if he doesn’t)
  • read my Bible – sometimes one chapter, sometimes many, as long as I read
  • practice Spanish – sometimes one lesson, sometimes several
  • write my blog (only not on Sundays)
  • practice my keyboard
  • clean something (I might do a load of laundry, or spend hours cleaning the house – as long as I do something.)

The thing is, even on my hardest days, I can usually get these things done – and that helps. It helps a lot.

 

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Autism: Not Normal

Just when I start to think that I am doing okay; that I could possibly keep a job without experiencing extreme anxiety; that I might be able to function in the real world; the phone rings. It isn’t even for me, and my heart is racing. The call was anticipated, and even desired, and still it sent my son running to his room to hide, and left me pacing the house.

Just when I want to pass for “normal.” Just when I think I am not so very different from everyone else, and the diagnosis must have been wrong. Just when I am trying to convince myself that I can succeed in their world. Just as I am beginning to think that I can – the phone rings. One sound, and all of these thoughts, all of these theories, all of these desires go flying out the window.

And I am reminded that the only reason I feel okay right now is because I am home. And even home doesn’t keep me safe always.

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We wanted this call, yet we can’t deal with it just the same. The call wasn’t even for me, and I am having a panic attack. It was for my son, and as he says, he can’t. It isn’t that he won’t, or that he doesn’t want to. I know this place he is in, and I feel for him. We need this, and still we can’t.

So he is locked in his room, looking very upset. He knows we need this, but he can’t! And he feels it. But that acknowledgment that we need it, or that he should do this, doesn’t help him to do it. It didn’t help me, either. And to force the issue will bring to him the same traumas that were brought on me whenever I was forced to do these things.

And I wonder why these things, that are supposed to be in place to help people like us, still require us to be able to function in a typical way in order to get the help. It seems unfair, and it reminds me again and again that we are not typical – and it hurts. It does, because I was just beginning to think we were doing okay.

It is always a reminder from the outside that confirms the fact that we do have Aspergers to me. When we are alone, doing our thing, we do okay. But when we are called into their world, and fail to meet their expectations over and over again, it hurts – and that is when I know that I have Aspergers. It isn’t an excuse. It isn’t a pretense. No matter how hard we try, we fail in their world.

Only that acknowledgment then confirms to me how very important this phone call was – because we need that help. We can’t just get up the courage, and find jobs, and continue on in their world. I have been there. I have tried that. I have a string of shame and failures to prove it – but I never succeeded.

The only time I really believe I could succeed in their world, is when I am not required to be in it. So I am reminded of today – and I am praying that they will understand, and will help (my son) despite (our) inability to answer the phone.

 

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