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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: Wish He Got It

After thirteen years, I wish he could understand this. I would think I had expressed it well enough in the past. I know that he doesn’t like to be controlled, but I wish he would realize that my response… this need… isn’t about controlling him. It isn’t about him at all. It is about me.

My energy had been overwhelmingly low, yet we had company coming – so I had to push myself to clean. We didn’t even have much warning, as he called the night before to let us know that he was coming. It was my day to clean, but then it was also a holiday – meaning that my husband would be home, which makes it near impossible for me to move. My issue, I understand. I just really struggle when other people (my husband included) are around to be able to do anything.

Well, I got up, and pushed myself right from the beginning. I didn’t even have breakfast before I started cleaning, for if my son was up, I would have to wait most of the morning even to start the laundry, while waiting for him to have his shower. I cleaned the bathrooms, changed the sheets on the ‘pink’ room bed where he would be staying (my husband uses that room part of every night when he wakes up and doesn’t want to disturb me… speaking of which… but that is another story) I made my bed, and then I went to the kitchen to get my breakfast.

Breakfast is always hard for me because it seems everything I would like to eat makes me feel sick – and I already start every day nauseous. It is much worse when I wait to eat. I don’t do well at all with low blood sugar; a place I get to really fast.

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So I walked into the kitchen feeling overwhelmingly hungry, and nauseous, and… not good. I was met with an overpowering smell of sausages cooking. Thirteen years and he still doesn’t get it. I don’t know whether he thinks about it and ignores me, feeling like I am being unreasonable – or that he doesn’t think about it at all. Whatever the cause, I really wish he would understand this, and I was really hoping that when they explained my sensory issues, that he would realize this isn’t about him, and I can’t ignore things like this.

I know that lots of people eat sausages and such for breakfast. For me, however, any strong smell in the morning will cause me to… fall apart. I would say “be sick” because I am, but since I haven’t actually thrown up since I had ¼ tsp of Kraft dinner nearly 20 years ago, it wouldn’t be completely accurate to state it that way – only just because it doesn’t make it past my throat, doesn’t mean it doesn’t cause severe distress, and that is what such things do to me, over and over again.

I had a moment of thought as I walked into the kitchen. Long enough to turn on the range fan, and run out of the room to ‘find something to eat so I don’t completely lose it’ when I ‘lost it.’ I must have sat rocking in that corner for nearly an hour – despite all I had to do that morning before my brother in law showed up. I couldn’t bring myself out of it on my own; I never can.

There are some things that will bring me to that point whenever I smell them (fried mushrooms, Kraft dinner, the cat box when my husband is cleaning it, or the garbage pail where dirty litter is kept when the lid is off) and others that while bad the rest of the day, are overpowering especially in the morning. Sausages are one of those, and I have mentioned that before.

Yet despite the fact that I was (not purposefully, that was where I was able to reach before I completely shut down) in highly visible distress – and it was quite obviously what he was cooking that brought me there – he didn’t try to help. He didn’t try to talk to me. He didn’t do anything at all for nearly an hour. Even then, it wasn’t until I was able to gather the presence of mind to pray that he would bring me something to eat so I could get out of this that he actually did something (“while they were still praying…”) as I was finishing the prayer he came and asked if he could get me something. “I need to eat. I can’t think,” was all I was able to get out. He brought me an orange, and some tea, and I was able to (shakily, and even more worn out for the rest of the day than I was already struggling with) carry on with the day.

I just wish he would “get it.” Though it may seem controlling to ask him not to make such foods in the morning, it isn’t actually about him at all. I just can’t. And the distress is very real, and not at all something I can ignore.

 

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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: Morbid Thoughts

If I died, I would be okay. Those are the thoughts that have been consuming my mind this weekend. Morbid thoughts, I admit, but my thoughts just the same. The difficulty is that I am sick. Really sick. I have been battling these issues for many months, but they continue to get worse. I don’t know that I am dying, but… have you ever been so sick with the flu or something that it felt as if you were going to die? And it was so bad that in the moment, you really didn’t care if you did die, if only you would stop feeling so sick? That is how I have been – only I don’t think this is the flu.

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I also don’t think that I am dying. It is possible, and as I consider that, I consider all the people I know who died young for health reasons – two of my cousins (cystic fibrosis – age 21 and 26,) four people I went to highschool with (heart attack – age 33, stomach problems – age 34, brain tumour – age 36, breast cancer – age 39) three of the people I went to school with had very young children they left behind. At least I don’t have that. Then there was the boy.

A beautiful little brown haired, green eyed boy, with an amazing personality. When the other kids were fighting, he was the one who stepped in – despite being only two or three years old, he was able to get everyone playing nicely again. Much more mature than I was for all of my 27 or so years, and training in this area. He was just good at it.

Funny, and social, and caring (“but the owls can’t eat the bunnies,” he told me when looking through an encyclopedia – I know, but the kids loved the books – “the bunnies would be too sad.”) and smart… that boy had a lot of potential. Even my son liked him, and my son didn’t like ‘little kids.’ My boy was four years older.

He had his forth birthday party, and I dropped off my son, and a nephew. They had a lot of fun. I might have stayed, but I knew his family. I had known them for two years. I stayed for his third birthday party, and left the boys for his forth. And it was fine.

The next week, as he was dropped off for daycare, I noticed a limp. It came through the day, but (though I supervised carefully) I hadn’t noticed him hurt it in any way. Day after day the limp got worse, and this energetic little boy started napping during our early morning time outside. He was so tired all the time.

He could have pulled the muscle riding the bike he got for his birthday. Maybe another (quite rough) boy in my daycare knocked him down. “Try keeping them apart,” I was told. But the solution wasn’t easy, and it wasn’t helping. He just kept getting worse.

And then I got the phone call. Leukemia, they told me. I filled up a whole sheet of paper listening to his grandma on the phone. I still have that paper.

He fought for two years, brave, beautiful child that he was. And as I was in Vancouver with my children, placed just a few months before, being told that all three had Fetal Alcohol Spectrum Disorder, this little boy passed away while playing crib with the nurse. “Fifteen two, fifteen four, and a pair is six,” I am told were his last words as he fell asleep. I was standing in the kitchen making supper for my third anniversary with my husband.

The first time I left my children with a babysitter (with anyone other than my husband and mom) since placement was for his funeral a few days later.

Tomorrow is my 13th wedding anniversary. It has been 10 years, and as I think about how strong this pain and these thoughts of death have been this weekend I realize… it is not for myself that I cry. These tears are for him.

 

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Autism: Whole Day Gone

Though of course I would rather not be sick, and not have to go at all, I was thankful to finally go in to see my doctor yesterday about my nausea. It has been progressing badly, and has come to the point where I am sick all the time. I don’t know what to eat. I don’t know what not to eat. I do know that I can’t not eat, because that would make me worse.

It is a very difficult position to be in, where it feels as if even healthy food is conspiring to make me ill. And what can be considered healthy food these days, anyway? I suppose that I could try to eat all organic, natural food. I am quite certain that, although many people may not be badly affected by it, GMO’s and pesticides and such are really bad for me. Only I can’t afford organic, and what is more, eating those foods doesn’t really stop me from getting sick anyway.

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I have come to the conclusion that this is far beyond me. I can’t fix it on my own, and I can’t leave it as it is. I am so sick. I know this isn’t caused from medications, as I am hardly on any right now – just the allergy pills I can’t go off (despite being two months past the time I can usually stop taking them), and the occasional Gravol for nausea (only when it is at its worst) and pain medication (again, only when it is at its worst.) It has to be something else.

Though I could go and list all the things this could be, I know that would only scare me and make it worse. So I will wait, and pray, and hope they find an answer for me.

It isn’t just the nausea, though – as if that weren’t enough. I am also struggling with pressure in my head, that is causing a tingling sensation in my face, that matches the feeling in my hands and feet. On top of that, my entire body aches, as if I have the flu – but I don’t. And then when I stand for long periods (5 minutes or so) that nausea turns into pain in my abdomen that doesn’t seem to let up for a long time after sitting.

Whatever it is, it isn’t good.

Even so it took months of trying to deal with this on my own before I finally agreed to go to the doctor – and then it was the third day of telling myself I had to go before I could actually bring myself to do it. It doesn’t help that when I am crashing, or not feeling well, it becomes really hard for me to leave the house. This week (as often happens) I was both.

Well, I finally went to the doctor. I went down with my husband on the way to work. My doctor is at the walk in clinic, and I was the second in line to see him (having shown up before they opened.) I was in, and out, and home in less than an hour. Not a big deal. And the thing is, I like my doctor. He seems like a good guy, who genuinely cares about people.

I wasn’t so sure about him at first, but that was because I was seeing another doctor in the clinic, who I really liked, and was suddenly told he wasn’t my doctor anymore. I had to see someone new. I don’t know if you’ve realized this, but I don’t do new well – so I kept going in and asking for my old doctor anyway, and he seemed happy enough to see me.

When, after a few years of considering it, I decided to ask about Autism, I thought it might be easier to see someone I didn’t know. So I went in, and asked for my new doctor. And maybe that is why I like him. Though they are always in a hurry, he sat down, and looked at me, and listened to everything I was saying. At the end, I could tell he believed me as he told me, “This doesn’t change who you are. You will still be the same person, but we are going to get you help.”

Ever since then, I have asked to see him, and I have always felt that he really listened to what I was saying, and most importantly that he believed me.

Well, that was it. He gave me papers for lab work, which required fasting, so I had to wait to go in. He said to come back in a week for the results, and then I drove home. Not a bad experience. Not a lot of time away from home. No strong stress (above the illness that brought me in there in the first place.) Yet though I got home before 10am, that was my entire day. I didn’t get anything else done, and from the hours of 10am to 5pm (when I had to leave to pick up my husband from work) the only things I remember doing were looking at my emails, and reading Facebook.

An entire day gone for the sake of a decent 10 minute appointment. And that is who I am.

 

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