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Autism: Handy Dart

It had been so many months since I sent in the paperwork, that I just assumed I didn’t qualify. “They could have at least written back and let me know,” I thought; and then I forgot about it. Well… not quite forgot, just sort of let it go. So I don’t qualify. I didn’t really expect to anyway. After all, I am not that bad.

For months I stopped talking about it. There was nothing to say. Only that morning I had been talking to my son, and questioning why people don’t respond even just to say, “sorry, we can’t help you.” Just to get some sort of closure. I wasn’t expecting anything much out of the conversation. I had been sick, and still wasn’t thinking well. It is like illness puts a fog on my brain that doesn’t let up for a long time once it is over – and I was still in that fog.

I hadn’t talked to my son for a while, because I had been very sick – so had my husband – and he didn’t want to get sick, too. So he stayed downstairs, and I slept upstairs for a lot of days. I still wasn’t thinking well, but I was getting better, and it was really nice to spend time talking with my son (even though I hardly knew what was being said.)

When he went back downstairs, I checked my email, and had received a message from my therapist letting me know about cheap swim times at the community centre. Knowing that I am not close enough to town to either walk or get a bus (no buses come anywhere close to my house – I would have to walk near an hour to town to catch one) and that my husband takes our only vehicle to work (besides, though I can drive, my anxiety around driving usually keeps me home anyway – especially when I would have to drive to town and back three times in a day to get my husband to and from work, and go do my thing in the middle of the afternoon.)

I am pretty isolated here, though truly we are not that far from town – just 7 minutes driving – but it is 7 minutes of twisty, turny, hilly terrain, which I am not well able to walk.

So months ago, trying to encourage me to get out of the house sometimes, my therapist suggested the “Handy Dart” bus service. It is a service for disabled people who couldn’t manage to catch a regular bus, or get to appointments and such in other ways. For $0.25 more than the regular bus service, this one will pick you up at your home and take you right where you need to go. Then they will pick you up when you are done, and take you home again. Sort of like a cab, only you have to phone and set it up 3 days in advance, including letting them know if anyone else is coming with you (for an extra ticket) and it is a bus, so shared.

Considering it would cost about $20 to get from my house to town in a cab (that is just one way) this is a great deal! Only it is reserved for highly disabled people: cognitive, physical, and sensory.

I am isolated, and I do have severe anxiety. I do get bad motion sickness, especially on buses. I do have bad sensory issues (only I am not sure how the Handy Dart can help with that since there would be other people on the bus, and sometimes other people smell.) At the same time, if there were bus service in my area, I could take the bus (not pleasant, and very anxiety provoking, but I could do it.) If I had another vehicle, I could drive to town. And if I lived closer to town, I could walk or ride my bike to get where I needed. Only none of those options are available to me. So months ago, I filled out the forms for the Handy Dart. My therapist filled out her portion, and my husband brought it in.

Then… nothing. Nothing for months. Of course I didn’t qualify. I am not that disabled.

But my therapist suggested I contact them, and “see if I might qualify.” So I emailed them, because… phones. Less than 5 minutes later, I got a phone call back, “Sorry, I am not sure how this got overlooked. The boxes are all checked, and you are good to go.”

So I did qualify. Right away. No question that I am not disabled enough. Obvious to them that I need this service. So obvious. And I cried in response.

From the moment I first went to my doctor for an Autism diagnosis, I have received nothing from them except the fact that every step of the way it is so obvious to them that I am highly disabled.

  • Yes, you have autism… and OCD, and PTSD, and severe anxiety, and depression, and…
  • Yes, you are struggling too much to be working.
  • Yes, we will put you on medical leave.
  • Yes, you qualify for long term disability, though 60% of applications are rejected.
  • Yes, you qualify for Community Living services, reserved for highly disabled individuals.
  • Yes, you qualify for the Handy Dart service.

I should be thankful, and I am! It is just that… for nearly 40 years I fought so hard to be ‘normal’ and to ‘fit in.’ People never accepted that I belonged, though they were mostly too polite to tell me to go away, yet they always judged me as if… as if I could work hard enough to fit in, and just wasn’t making enough of an effort. And I believed them.

For nearly 40 years I fought, and failed, to be seen as normal, typical, capable… and now at every turn they respond as if to say, “Of course you have Autism.” “Of course you need these services reserved for the most disabled people.” “Of course you couldn’t succeed in that world.”

And I think, “so why did you make me feel for so long that these failures were all my fault?” “Why didn’t you tell me that I wasn’t able to be like you no matter how hard I tried?” “If it is so easy to see, why was I expected to be like everyone else?”

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” – Albert Einstein

That is me. I have spent my whole life believing that I was a failure; that I was stupid; because they tested me in ways that I never could have succeeded. And now I find that this was so obvious to them that there was never a question that I was ‘typical,’ or even could be. So why didn’t they tell me?

And why do I still think that if I fight myself hard enough, I should be able to do what they expected?

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Autism: My Dad

My dad was good at a lot of things. As I was lying in my bed yesterday afternoon, exhausted, and depressed, and overwhelmed by life, I was thinking of that. He was good at a lot of things. I am not really good at anything, and that fed my depression.

My dad was a good son. He was a good brother. He was a good friend. People liked him, and I think he genuinely liked people. He was the first one people often called for help. They would frequently drop in unexpectedly, and he would welcome them in. I remember at least two instances in my childhood where people were really struggling, and my dad invited them to come live with us; and they did.

Frequently my dad took people out for coffee, or just for drives, and he talked to them. My dad was very social, and was very easy to talk to. He was generous, and giving, and caring. He liked helping people. He liked being useful.

My dad liked spending time with people. We spent a lot of my childhood visiting with his friends and family, and camping as a large group with his extended family. He would go fishing with his brother and brother’s kids, and sometimes take us; when he didn’t, he always brought small gifts home with him to show he was thinking of us. He would take us and go to amusement parks with his sisters, our cousins, and his parents. He would take us to the drive in theatre (a lot!) or just rent movies and invite people over to watch at home.

My dad liked spending a lot of time with us. He would take us for walks along the creek, and on picnics, and for drives just to talk. When my dad was home and awake, he was almost always visiting. He even came with my older brother and I to nearly every cadet meet we had. He would bring donuts he got free from Tim Horton’s because, of course, he was friends with all the workers there. Even my fellow cadets (I’d like to say friends, but since I didn’t talk, I guess I wasn’t much of that to them) liked him.

My dad liked to sing. He had a great voice, and when we were on our drives, he would put in a tape and sing along. He would encourage us to sing too, even though my younger brother and I did not have good singing voices; he never criticized us for it. I still love the songs that he used to sing.

My dad was a hard worker. Though he worked in a steel factory, in a physically demanding job (and though he was injured before I could remember, and had a bad leg as a result), and though it was shift work which changed week to week, he never complained about having to go to work. He worked full time, and was the sole income provider for our family for a long time. Even so, when he wasn’t working or sleeping, he was visiting with, and helping people.

My dad was good at woodwork. He finished our basement in the house we moved to when I was four, and put a lot of detail into it. He built us a nice toy box/bench, a corner cabinet, a desk… He kept our homes in good condition. He even whittled animals and things from wood, and they were really nice. He was just good at it.

My dad was good at a lot of things, but the brokenness in him… I guess that is why people didn’t believe me when I did speak – for my father was good at a lot of things, but the deepest seeds of evil he pretty much reserved for me.

My dad was good at a lot of things. I am not really good at anything. Maybe that is why I am depressed. Maybe.

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Autism: Hindsight is 2o/2o

My son was looking for more pictures of China today, so I went through a couple of DVD s which had pictures taken off of old, dead computers several years ago. I found a couple of pictures and sent them to him (most of them were from our trip to Ontario in 2008 with the kids, and Christmas of 2008 and 2009, so didn’t have cat pictures in them as she wasn’t there.)

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Looking through the pictures left me once again wishing I could turn back time, and save the adoption before it failed. As I went through them, I stumbled upon a page of emails that I had copied from the months leading up to the first time the children were moved.

I was surprised by how much I have forgotten over the years regarding the children’s behaviours. I knew they did these things, yet with passing time forgot the frequency and intensity through which we experienced them.

There was just so much struggle with all of them, and while I did remember it wasn’t easy, I really did forget how hard it could get.

As I read those emails I realized a few of things that I didn’t notice before:

  1. I should have journaled rather than share our challenges through email during that time – for had I been reading these things about another family I would have thought the children were way too challenging for any family (I also forgot that upon placement we were told the social workers had thought our middle girl was unadoptable) and that the situation was hopeless.
  2. Looking through the pictures doesn’t tell the entire story; so while I knew by looking at the pictures when the children had been struggling just before they were taken (by the pure exhaustion on everyone’s face) and I remembered the struggle they were having, the intensity wasn’t accurately portrayed in the photograph.
  3. If I could turn back time, and do all the social workers told me were essential to a successful adoption with these particular children, and did everything `right,`we would still have been at severe risk of adoption disruption – for the emails, though I know every fact was true in them, tell of a family who was doing all they could to `hold it together,`and couldn’t possibly hold on much longer.
  4. Unless I kept all of those facts presented in the emails to myself, I would have found myself one day standing before the ministry and having them tell me it wasn’t going to work – and it likely wouldn’t have been much longer than we had with them.
  5. If I did everything `right` and never emailed or spoke much on any of our struggles, we might have succeeded in adopting these three children, but I still would have been completely burnt out, and I still would have isolated myself from other people, who would have always judged me, and who I could never please with the children I had. I was doomed to feel I had failed in some way.

I wanted my children more than I can express. I loved my children more than I can say. Losing them was a huge trauma I have yet to overcome. But I think now that even if I had done everything `right`, the adoption was still doomed to failure.

I hate that that is true, for I put all of myself into succeeding with them, and it still breaks my heart that I couldn’t do it. It breaks my heart that they are gone. And I miss them so very much.

 

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Autism: On The Defensive

“There aren’t enough jobs for everyone who wants one anyway,” I think to myself in defense. “Some people are always going to be out of work; especially in this economy. So why should I push myself to do something that would be really bad for me, and lead to another failure.”

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The thing is, I do get so defensive when I feel pressured to work. Yet people always seem to judge and pressure people in one way or another. Why do we do that? As if our opinion, and our preferences (or how we chose to push ourselves) is all that matters – and who that person is, and what is best for them, means nothing at all.

I know that people do this, yet it still consumes my thoughts, overwhelms me, and fills me with anxiety and self hatred when it is directed at me; it always has – even when I was working, and especially as I was raising my children; for parents get the worst pressure put on them to conform to other peoples opinions.

  • I should want to work; what is wrong with me?
  • I should push myself to work; I must be lazy.
  • I shouldn’t want to be home all the time; it is wrong to be isolated.
  • I shouldn’t be living off public support; I must be selfish.
  • I should just live with the overwhelming anxiety, depression, irritation, exhaustion, burn-out… that comes from working – like everyone else does, right?
  • If I can’t work, I have no value.
  • If I have no value, I don’t deserve… anything.
  • If I can’t meet their expectations, they would be better off if I didn’t exist.
  • No wonder they hate me.
  • If they hate me, I must be no good.
  • Since I can’t be good, I hate me, too.

And you see how quickly the pressure for me to do what they think is right leads to depression and suicidal thoughts?

Because no matter how hard I try; no matter how hard I have always tried; I am always a failure in their opinion – and no matter how defensive I become towards their opinion, somehow I always end up believing they are right, and I am broken, and I blame myself for that brokenness, for they seem to be of the opinion that if I tried harder, I would be okay.

Yet it is for these very reasons that I was approved for disability. It isn’t as if I woke up one day thinking, “I don’t feel like working anymore. I think I will live off public assistance,” and then somehow convinced those in ‘power’ that a person who was able to function well, but didn’t feel like it, deserved that money. It just doesn’t work like that!

It was out of the brokenness that they found me, and realized that (when 60% of applications are denied for this type of disability payment) that my barriers to employment were so extensive that it was unlikely I would be able to work for a very long time, if ever again.

And still I know that if I ever find myself healed, and healthy, one of the first things I would do would be to go looking for work. I don’t need the opinion, disgust, judgment, or pressure from others to take me there. If I am well, I will find work. If I am not, pressuring me to do what I am not ready for will only break me further.

 

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Autism: Not a Great Week

This past week has not been a great one for me. For one thing, I didn’t write much, and am now two blog posts behind schedule (keeping in mind that I have been scheduling my posts three weeks in advance, which is best for my stress levels, and am now only two weeks ahead.) It isn’t exactly that I had nothing to write about, but more that I didn’t have the energy to motivate myself to do much more than binge watch Netflix for much of the week. These things will happen with me, despite my best efforts to push past it.

Going along with that really low energy thing, I hardly even worked on my lessons this week. Maybe two days, and I didn’t even do all of them then. It isn’t that I didn’t want to, just… I couldn’t make myself do anything – even the lessons that calm me.

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I did clean, but I can’t express how difficult that was for me. Every moment was like torture as I pushed my exhausted body to move, knowing that leaving it messy would just make everything worse, including my energy level. Yet moving made me so tired that I had to take breaks between every (5 minute) activity: clean the bathroom, watch Netflix; wipe the counters, watch Netflix; vacuum one room, watch Netflix…

I did go for a walk one day with my son. That was especially hard, and I almost didn’t make it home, I was so very tired. You’d have thought I was trying to move after running a marathon, instead of just taking a short walk after a decent sleep. So tired. I don’t know what is going on there.

Then above that, I have been unusually prone to tears. I mean, I would just be going along, feeling okay, when suddenly the tears would come – and everything bad that every happened weighed on me, and the tears wouldn’t stop. And no, it wasn’t the right timing for that.

A whole week of nothing. I went to care group, but didn’t speak – my words weren’t working this week. My brother in law came for a visit, and stayed two nights, and I struggled to talk with him, too. I worried that he would think I was being rude, or angry, or… I don’t know – whatever it is that people assume I am when I can’t talk to explain myself.

Everything I ate made me sick, and so I ate a lot of wheat – not the best choice for me, but the easiest to get down when I feel like that. Of course, then I had heartburn, and itchy skin, and horribly itchy ears, and insomnia, and of course it only made the nausea worse – but not until after I had eaten it, which is why I could. Eating wheat also brings cravings, and reduces my self-control in eating other foods… all to say it was a horrible week for health and diet.

All of this brought my functioning down to a very low level. If I could have brought myself to do my lessons, I wouldn’t have understood them anyway. If I could have talked to people, what came out likely wouldn’t have made any sense. It was not a week for making decisions. It was more one of those weeks that in the past have caused me to fail at just about everything I have tried to do because people will push me, and will not accept that while I am quite capable a lot of the time, sometimes I am just not!

So I guess it is just as well that so little got done this week, because whatever I did would have just become another regret to add to the pile of things that torture me at times like these. And once more I am thankful that they decided I needed to be at home – because really, at times like this (which happen too frequently to count) I just can’t survive out there.

 

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Autism: Choices Made Long Ago

This morning I woke up early with a nearly overwhelming urge to plan What if? Not what if I get this job, or win the lottery, or suddenly find myself pregnant, but more on the lines of: What if I could return twenty years in the past, indwell my twenty year old body, and live and make decisions based on who I am now, and what I now know?

If that were possible, what would I do differently? What would I do the same? Where would I live? (On ‘my little corner’ where I always find myself in my dreams?) Who would I live with? What job would I do?

If I didn’t move across the country, would I still have turned to church and found faith? If I hadn’t met my husband, what would his life be like now? (Probably much messier, much simpler, and easier for him, I imagine.) If I hadn’t tried to adopt “my” children, would someone else have succeeded in adopting them? Would they still be together now?

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If I hadn’t moved away from home, would I have followed through on homeschooling my son? If we had remained close to our families, would my son be more social? Would he have friends who lived close enough to visit? Would he seem so alone?

If I didn’t have twenty years of failure behind me, would I still have sought my Autism diagnosis? Would I have brought my son in for his? Would we still have gotten it?

I am completely overwhelmed by the reality that my choices have such lasting consequences – and that if I choose wrong, working to fix it won’t remove all that was set in motion due to that choice.

I don’t know whether this is in spite of, or because of, my form of Autism, but I spend an unreasonable amount of time and energy considering things that are outside of the laws of the world I find myself in.

And though I know making plans for what I might have done is at best a waste of time, the pull is so strong that I will likely spend my day fixated on it anyway. Though I realize it will ultimately lead to me feeling trapped so far from home, for a while – a very little while – I will believe that “anything can happen,” and there I will find hope.

 

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Autism: Overwhelming Empathy

Last night, I got three hours of sleep. It wasn’t even all together, either, and I am really feeling it today. The thing is that I have been so nauseous lately that I end up eating all the wrong foods just so I can eat something. Yesterday that included English muffins with peanut butter. I know that wheat gives me insomnia, but that is my ‘go to’ food when I am nauseous (which has happened more often than not throughout my life) and I didn’t know what else to eat. If I didn’t eat, it would have just made things worse. It is pretty bad when one of the main activities for staying alive makes it so hard for me to live.

Anyway, as a result, I am hardly accomplishing anything today: A couple of loads of laundry, my lessons, and hopefully this blog.

I picked up a ‘new’ book to read last night, and for the fifteenth time in as many years read the chapter that hurts every single time I read it. About one hundred and forty years ago, someone’s dog died. The tears began before I even read the words – after all, I have read this book fifteen times: I knew it was coming. It wasn’t just a few tears, either, but such a deep heartache that I felt in every fiber of my being.

The dog died. That is just so wrong.

It doesn’t matter that he was old, or that he had walked so very far, or that he survived several books earlier when they thought he had been lost. I mean, yes, I was thankful he survived back then. I was thankful to read that he had lived many years after… the thing is, it is never enough.

This wasn’t my dog. She wrote well, and I felt that I knew him, but it wasn’t my loss. Still it hurt. It hurt a lot!

The tears started, and grew, and grew, and pretty soon I was near hyperventilating.

Her dog died, and she knew that she was grown up, because now she had to move forward alone. I cried for her being alone. I cried for the dog who was buried by the path he loved so much, but who would not be moving along with them. I cried for them, despite the fact that they lived so very long ago.

I cried for my dog, who died suddenly four and a half months ago. I cried for the dog that I read about in the news, who died in a house fire beside a young boy, who also died in the fire. I cried for the boy. I cried for the dogs in shelters, and the ones abandoned or abused. I cried for all my dogs who have died, and for my cats, too. I cried for my dog who is alive, but won’t always be.

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I cried for all the losses I have experienced, and I cried for all the pain that is in the world. I cried for hungry people, and broken children, and broken adults, and all who are lost and will never find their way home.

I cried for about two hours, and then I washed my face, and said goodnight to my husband. As he fell asleep, I started crying again – for the pain of nearly one hundred and forty years ago is just as real, and felt just as strongly today. And I feel the pain of the world, and I feel it so deeply that I can hardly move on.

So you see why I have to block it out? You see why I might struggle to respond well to the pain of another? It isn’t that I don’t feel, but that I feel so much, and so deeply, that I become overwhelmed.

 

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