Monthly Archives: February 2017

Autism: Inappropriate Response

My husband brought home China’s ashes last Friday. He handed me a paper bag, like a gift bag. “What is this?” I asked him. “China’s ashes,” he replied – but he let my dogs out when he came in and I had to go out and get them (they don’t go out alone.)

I carried the bag down the stairs, and was suddenly overcome with a desire to laugh. “What is wrong with me?” I asked myself as I stood outside of my son’s living room door holding a bag, containing a box, holding what was left of my son’s best friend – and trying to suppress a smile.


Finally under control, I walked through the door and handed him the bag. He took out the box, and I took out the envelope, and read the “Certificate of Private Cremation.” “I never got this with Gryff,” I said – even though he had been privately cremated, too.

As I looked at the box, it suddenly became real that she was gone… in a box, a tiny box, and as with Gryff it didn’t make sense that one who filled so much of our lives could just be gone; all we are left with is a tiny box.

It didn’t make sense, but it did make it real – and that inappropriate urge to laugh was drowned in a downpour of pain. And the pain was overwhelming, but it would not come out – so I searched for a sad movie to watch, and I watched sad music videos on YouTube, and I cried: for I loved China for so long. I loved her so much, and I never wanted her to go – and that first week where I cried some, but laughed too much, has not made sense. China is gone – and it should hurt.

For the entire weekend between that moment and now, I have been in pain. It is right that it hurts. It all hurt this weekend – the loss of China, and Gryff, and my grandma, and my grandpa, and my cousin, and… the list grows, and the pain builds, and it should be that way. It should be. For this pain is the cost of loving them so very much – and I would pay it again to love like that again (but please, don’t let it be soon.)


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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.)


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: Separate Bedrooms

Yesterday I moved back into my own room. It may have seemed like an unexpected decision to my husband, but it has been a long time coming. You see, I don’t sleep well in the room with him there. It isn’t him, and it doesn’t reflect how our marriage is going (as it might seem from an outside view.) It is just that I have so many sensory issues that it is hard enough to sleep alone, let alone with another person.

The breaking point, however, was about him – and wasn’t his fault.

In the night, the older of my two dogs made a noise that made me think someone was struggling to breathe. It is ‘lucky’ she did for my husband had turned over in his sleep and pinned the younger of my dogs under the blanket between himself and the body pillow they have claimed as their own. I felt under and she didn’t move. I pulled her out, and her body was floppy.

I thought I had lost her; that my husband had ‘killed’ her (which really would have caused issues in our marriage.) It took nearly a minute, rubbing her head and calling her name, before she finally lifted her head and started moving. I put her back on the pillow to sleep, and tried to sleep myself. Needless to say, I was very tired in the morning.

There seems to have been no real harm done, and I know that my husband didn’t mean to do it – he just isn’t aware of what is happening when he is sleeping, and that makes sleeping with small dogs quite dangerous.

For the morning after, though it was ‘cleaning day,’ I spent most of my time unable to think or function, and fixated on the computer. At a comment for my son (that he was spending his time trying to write down everything he could remember about his cat, who died a couple of days ago) I spent a long time going through old emails, and copying any comment that had been made about his cat over the years since that account was opened.

After lunch, as I was changing sheets on ‘our’ bed, I decided that I needed to move back into the ‘pink room’. Clara survived last night, but next time she might not be so lucky. It wasn’t a sudden decision, as it might seem. I have been considering it for a long while due to my sleep issues, and the bad back pain I get as a result of sleeping in a narrow space (with my husband, and my dogs, there wasn’t much space for me. If I can’t stretch out when I am sleeping, I get really bad pain in my lower back on both sides, which I struggle with through the day.)


I didn’t do it before because I am up so often during the night for the bathroom, and wanted to keep the en-suite I was actually hoping that my husband would choose to go, since most nights he would get up at some point and move to another bed (so as not to have to put on his CPAP mask for sleep apnea again – without which, he snores really bad, which wakes me up.)

Since he kept moving to other beds, or onto the couch in the night, if I was having troubles sleeping, I had nowhere to go. (I can’t crawl in to a bed with ‘dirty’ sheets – even if it is my husband who has used them – even though I can go onto my side of our shared bed without changing the sheets each night.)

There wasn’t even consistency to it. Some nights he was gone by 1am (in which case I could stretch out, and not have so many back issues) where other nights, like last, he would stay until 6:30am – and I would wish through the night, as my pain got worse, that he would leave.

The fact is, sleeping in the same bed is not good for our marriage. I only moved back in with him the summer after I was diagnosed with Autism because I thought it would be good – besides, I was on heavy (okay, only 1/4 of the lowest dose – but they worked great!… until they didn’t) tranquilizers. They only worked for a couple of months however before they stopped putting me to sleep even at higher doses, and started giving me bad side effects. Nothing else the doctor prescribed worked as well, and I have been struggling there ever since.

I actually like the ‘pink room’ more than the Master bedroom, which hasn’t been repainted since we moved in thirteen years ago – but I kind of need the en-suite as I get up so often through the night (and especially since I hate sharing a bathroom, and liked the privacy of that one. When we have guests it is even more of an issue.)

In the end, however, as I woke from a narrow escape and to a very sore back, there was no real choice. My need for a bathroom was not worth the danger to my dogs, and I had to go. (Having the dogs move was not an option, for I sleep better with them, and without people – besides, it wouldn’t have solved the issue with my back, or my sensory issues from sleeping with another person.)

Yet, though it may seem that having separate bedrooms is a bad sign (or something) for a marriage, my moving to another room was not about our marriage at all.


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Autism: Death, Time, Loss

China died last night.

The news doesn’t seem real. For nearly nineteen years she has been in our home. My son had just turned two – a small, blond, curly haired boy full of energy, and full of love for this small kitten who (out of fourteen kittens born to three cats on the farm) claimed him as her own, and decided she would be coming home with us.


Now a very tall, bald-headed man (whose hair turned to dark brown sometime around the age of 3.5 years) who has little energy – and still a lot of love for this shrunken, blind, deaf cat who had stayed loyally by his side for nearly nineteen years had to come to me in tears to say the words, “China died last night,” and he broke down sobbing.

My son was with her in the end, and had to deal with her alone as we were in bed, and didn’t know. It is fitting that he was with her when she died, for in life they were hardly ever apart.

It breaks my heart to think of her without him now, and I pray that is not the case. I hope that she is there with him still, though he cannot see her. (Oh how I wish we could see them still, though their bodies are gone; how I wish we knew where they went.) I pray she is young once more, and free of pain, and right by his side – as she has always been.

China died last night; nearly 5 years to the day from when I lost my Chiku – and just over 7 months from the loss of my dog, Gryff. When will the pain end?

I fill my moments with small, unimportant tasks, and push the grief away. I can do that for a while, because for years she spent nearly all of her time downstairs with my son, and the loss isn’t so noticeable up here. When I go down to see him, though, her absence is heavily felt. The very air seems to cry that she is gone; even as I still see her in the places she has recently been.

I go to comfort my son and end up in tears myself. I am not sure he feels better when I go down; then again, I am not sure he wants to. Perhaps he is thankful to know that he is not alone in his pain. Yet, he is alone, for she was his. For nearly nineteen years I loved her, and the pain of this loss is great – but not as great as his, for she was his.

And maybe that is true of all of us who mourn – though surrounded by a crowd of people hurting from the loss, the pain is still our own, and we are alone in it. I don’t have words of comfort for my son – all I can share with him is my own grief, and my own lack of answers.

Were it up to her, she would be right there with him still – now and forever; and maybe she still is. I pray that she still is – and so much happier without a failing old body in the way. I wish we could see her still. I wish we could see all of them.

As I stop with the movies, and the games, and the distractions of the day, my tears flow. But how is it even those things can distract me? One would think for all of these losses, the tears would go on forever – and sometimes they seem to. So how is it I laughed today?

This world, this life… it is so wrong. I wonder how we carry on at all.

I used to long, so full of regret, to return to the beginning and try again. The more I lose, however, the more I long for the end – for the possibility that when I arrive, I will see them there waiting for me. And the pain will be no more.


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Autism: Insomnia

Though I am not able to take most prescription medications, especially anti-depressants for the side effects they cause me (and the fact they backfire and make me worse) I do happen to be pretty addicted to some OTC medications.

The number one reason for this is that I suffer with insomnia – and I cannot function without sleep. Not even one day. Now I know, after trying it last summer, that my struggles with sleep significantly improve when I eliminate gluten from my diet – but I don’t handle change well, and for me that has proven quite impossible long-term (especially when my husband tends to bring home so much breaded foods; since I can’t often get out shopping, I am left with what he buys.)


So while during the day I can sometimes make it through, I almost always take something to help me sleep at night.

When I first went to my psychiatrist, she prescribed a sleeping pill that actually did help to begin with. I would take it, and be asleep in 5 minutes. But that 5 minutes turned into 10, then 15, then… she increased the dosage, and it worked for a while – until it didn’t. When she started me on this, it was 1/4 of a tablet. By the time I got to the full (lowest) dose, I was having bad side effects, and it had stopped working.

She tried other things, but none worked – and then there was the $10 pharmacist dispensing fee I would have had to pay before the cost of the medication. Having no drug coverage, I gave up trying, and went back to what I was used to.

For much of the year, I have pretty bad allergies. The scratch test done about 10 years ago confirmed my known allergies to eggs and feathers, with a reaction also to dust and moulds. The most surprising was my grass allergy, which left a large welt along the length of my arm, as I had a severe reaction to every grass they tested. (For reference, my egg allergy, which leaves me wheezing and gasping for breath left a 2mm hive, and the grass allergy was 11mm-14mm for each one.)

Since I can’t avoid grass (the neighbours will grow and mow it) I pretty much live of antihistamines from April through September (or in the case of this year I am still having to take them in January – I must have developed a new, unknown allergy.) So I take a 24 hour non-drowsy pill, which doesn’t quite ‘fix’ everything, and then I take another at night to give it a boost. Benedryl is great for putting me to sleep, and works really well on my allergies as well.

Then there are my stomach issues, which I have had since I was a kid. No matter how I try to change my diet to avoid those things that I know cause me issues, I tend to feel nauseous most of the time. It is very rare that I actually throw up – but I do come very close most days. It is a horrible feeling, and one that will keep me up at night (for it gets worse when I lie down, as many of my issues do) and Gravol has me asleep in 45 minutes (pretty good when my best days without medication take upwards of 2 hours.)

My psychiatrist was very much against me using Gravol at all – she had her reasons which she was going to share with me one day, but I have yet to hear. Apparently she thinks it will make my anxiety worse. That is possible, but I have not noticed that, and I keep a journal every day – I should have seen the pattern by now. Besides, my brother’s doctor told him he should take Gravol to help him sleep. Who do I believe? Well, I try to avoid it, but when my stomach is really upset, I have found nothing better (and probably 90% of the time when I use it, I have a great sleep!)

And then there is the body aches and pains. Since my doctor, with the x-rays, CT scans, blood tests, and more that he has had done, has not been able to figure out why I am always in such pain (aside from a mild amount of arthritis in my back) I am guessing that, as my therapists says, it is because I have an extremely sensitive/raw central nervous system. Regardless of the cause, I am in pain a lot of the time.

My feet ache often, and always if I have been standing/walking/cleaning for any amount of time. That thanks to the club foot I was born with (both feet.) Above that, I am plagued with back aches, and side pain that get really bad at night. I struggle often with headaches, and (TMI, sorry) I have cramps that get really bad for nearly 2 weeks every month.

I have fears about taking too many medications, or mixing medications, so I try to think of what is the most pressing issue of the evening, and choose my ‘sleeping pill’ based on that.

And then there are the nights where I try to be ‘good’ and not take any medications at all – which causes nights like the last in which I got less than 6 hours of sleep. That might work for some people, but I have been a zombie all day. I can’t think. I can’t function. I barely know what I am doing. I have been sitting for so long that I feel numb. I have been staring at the computer screen for so long that my eyes are stinging. I have spent all day researching. “What?” you might ask – cat litter boxes. 8 hours of my life reading and looking at pictures on line of cat litter boxes. A wonderful use of my time!

So there you have another thing that a lack of sleep causes – fixations which I cannot break.

I think tonight I will choose the medication (likely Gravol, for I feel so sick after not getting enough sleep.) Being ‘good’ isn’t always worth it.


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