RSS

Tag Archives: autism marriage

Autism: Independent Living

While I have not been posting on my blog site often in recent months, it isn’t as if I have stopped writing altogether (as if that would ever be possible!)

Several months ago, right after I had struggled in getting my vision testing done, I did a Google search on what to do when vision testing doesn’t work for you.  I came up with the site “Quora,” and have been answering questions on there ever since.

For example, the question from this morning was:  “Can adults with Autism live independently without support?”

So I answered it:

Some might be able to. It really depends on many factors.

I, for instance, am what would be considered to be “high-functioning.” I have an average or above IQ, am (sometimes) verbal, can read, write, completed college with honours, have held a job for months, even years at a time…

But…

I have a tendency to panic attacks, am prone to depression, struggle with time management (time seems to go too fast for me, and I move to slow in it, so working more than a couple of days a week is too much for me and I can’t live outside of that.) I get burnt out easily, and shut down when I am overwhelmed.

When I lived on my own, I could never make enough to pay all of my bills. I wasn’t out spending money on things I didn’t need, but still ended up frequently short on money. Not enough for rent, hydro, gas, other bills. I couldn’t do it.

Also I struggle with abstracts – and thoughts of the future are pretty much entirely abstract. For example, I moved across the country, after completing my Early Childhood Education (with honours), to open a home daycare in a community that needed daycare.

My view was that I was allowed to care for 7 children, including my own. (5 under 5.) So even if I only filled those 4 spaces left for young children, I would have no trouble paying my bills. I took out a loan, moved across the country (fully expecting I would have no trouble flying home a couple of times a year to see my family) and opened my daycare.

What I could not see was that most of the care I would provide would be part time. Those 4 spaces would be filled by 10 children – and frequently I would be juggling and having to communicate to the parents in order to never go over 4 children at a time. Communication was hard. Getting enough income to pay the bills was very hard. Working full time to try and make enough to live was exhausting.

I couldn’t continue long term, ended up NOT being able to pay my bills, struggling to get money to eat, having my gas shut off, defaulting on my loans, and having to claim bankruptcy. NOT because I was out spending money on things I didn’t need, but because no matter how hard I tried (and 20 years later, this is still very true) I could not make enough to deal with everything.

In fact, trying to deal with everything a home requires to run (even excluding money – which had I been diagnosed, and been put on disability, I might have been able to manage) is so overwhelming that my brain shuts down (like an overloaded circuit breaker.)

Running a daycare was not the only factor in my inability to live independently. I also tried working in construction, and working in a small motel. Even in jobs I really liked, and could work at part time, I would become so panicky I couldn’t keep going. I am now at home on disability, as that issue became worse the more I tried, not better.

I am married now, and my husband works and takes care of the bills. He also helps me to socialize, and does the majority of the driving (even though I do drive, the unpredictability of other drivers and pedestrians causes me to panic and become exhausted too fast to actually get much done once I reach my destination.)

Maybe if I had a good level of disability payment support, and lived in a place where I was walking distance to most things I needed (groceries, church, etc.) and was on a very good bus route to anywhere else I might need to get to, I might be able to live independently. As it is, even as a high functioning adult with Autism/Aspergers, I can’t do it.

Easter 2015

Advertisements
 

Tags: , , , , , , , , , ,

Autism: Me Trying to Live Better

I don’t tend to do New Years resolutions. For one thing, January doesn’t feel like the start of anything for me. From the time I was very young I have considered a year to go from September through August – and when I say something happened ‘last year’ that is often the time frame I am going by.

For another thing, I don’t tend to stick to things long enough to say, “this year I am going to…” and mean it. I get burnt out too fast. I get overwhelmed too fast. I quickly fail. Again and again I fail. I really don’t need anything more to be considered failures for me as I carry them all around with me, and they weigh me down, and make it harder and harder to do anything well (or even have the energy to try.)

So I don’t make New Year’s resolutions, and this year is no exception.

Only I have been thinking about this a lot.

I am a compulsive person. I need routine. I need to know what is expected of me – even if I am the one putting those expectations on myself. I don’t do well with open ended suggestions, or time frames, or flexible commitments (what does that even mean?!)

Because of this I tend to push myself way beyond what is good for me (though I do realize it isn’t much in terms of what other people do) and I… make a mess of things. I push myself, and push myself to keep these commitments – and while I am keeping them, I am failing.

Take this blog, for instance (and for instance here means this is what I am talking about.)

004

In the beginning I was writing six days a week. My decision – not based on what anyone else asked for – yet a commitment just the same. I pushed myself to burn out, and finally decided to go down to three days a week.

That was more manageable (after all, most of my posts take less than 20 minutes to write – and it isn’t like I am doing much else) and yet I was still burning out. I have been writing now for 2.5 years, and for the last 7 or 8 months I have been pushing, panicking, overwhelmed trying to schedule three posts for every week.

And why???

I keep asking myself that. It isn’t like someone else told me I had to write three posts a week. It isn’t like missing some here and there would have been the end of the world. But I am compulsive, and I couldn’t not write.

Yet I have been painfully aware that because I am pushing beyond what I can handle, I have noticed that my posts (at times) have been suffering. It isn’t even so much that there is a badly written post here and there – that could happen, and I know it does, but… It is that when I am overwhelmed – whenever I am overwhelmed, I tend to become negative and start venting.

Venting.

It isn’t a good thing.

The purpose I had for writing this blog was to say “Finally I have been diagnosed – now what?” I expected things to get better. I expected maybe that others would understand my struggles more, and that I would understand my struggles more, and that because of that, things would get better.

But I still struggle badly with depression and anxiety – even though I am no longer working. I still struggle with sensory issues, and burnout, and irritation. I still fall into moments of despair.

And I don’t think that it is good for me to be writing so much that I turn this blog into a journal instead. I am trying to remind myself that not everything needs to be shared in order to be honest – I really struggle with over sharing; I have for a long time.

So though it is not like me – and I am not even sure I can function this way – I have decided that it is best to only write my blog when I have something to say. No schedule. No pressure. No venting.

So not like me – yet so what I need, I think.

And this decision, I have to remind myself, is a good thing. This is not failure, this is making the right decisions for me. This is making the right decisions for my family.

This is me trying to live better.

 

Tags: , , , , , , , , , , , ,

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.

DSC02549

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.

DSC02573

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.

DSC02577

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.

 

Tags: , , , , , , , , ,

Autism: December 2017 part 1

December of 2017 was a really tough month for me. A month filled with panic, hopelessness, and despair – and I really can’t even say why that was. It was just hard.

It didn’t help that time seems to be speeding up for me, making it even harder (and it has always been hard) to align my perceptions with reality. It also doesn’t help that there is so much pressure around Christmas – gifts and such – whether real or perceived.

And even if people say not to worry about it, worry I will – for excusing myself from what I feel that others expect of me leaves me with an overwhelming sense of guilt. Even if it doesn’t matter much to them I will still carry that guilt with me… forever (at least it seems like that, since I still feel guilty for every time I disappointed anyone, or said ‘no’ to a request, or…)

So it was a hard month. A sad month. A month where most days I could barely move, and it was all I could do not to cry most of the time. It was only a week before Christmas when I was able to gather up the motivation to even decorate – when often I have things up by the beginning of the month (for I do like the lights!)

Christmas Eve was busy. I made a turkey dinner (because it is cheaper than chicken) for my husband and son and dogs and cats – I don’t eat meat – and we went to church for the 2pm service instead of at 10:45am as we usually do (it was a strange Sunday.)

That might seem normal for most people, but it is a lot for me. So overwhelming that I dreaded it for more than a week before – and I was only cooking for my family. It wasn’t like I was cooking for a large group, or even for friends and extended family (that I can’t do, it is just too much pressure.)

It isn’t even like making food for my dogs (I have 3) and cats (we have 2 upstairs – my son feeds his own cat) is unusual. I do it every 3-4 weeks. But it is something I do on days when my son is cooking usually for it is very time consuming. You see, I make a large batch for them, and then freeze the food in silicone baking cups; enough for a month. The meat has to be cut into small pieces, no bones, and the vegetables, broth and such get blended up and divided after. It is quite a bit of work on the day I do it, so I don’t like to do anything else that day.

But I couldn’t help it for Christmas since the turkey was large and for everyone (but me.)

Anyway, I got through it. Once it was done I could relax a bit.

DSC02538

 

Tags: , , , , , , ,

Autism: Excruciatingly Frustrating

There is this electric piano that I have in my living room It belongs to my niece, who has been… travelling the world for a couple of years. She asked us to store some things for her, and this was one of those things.

DSC02522

When she brought it, she thought that I would like to use it. At the time (having had little warning these items were being brought to my home for storage) I didn’t know where to put it. I have a keyboard of my own, and so told her we would just store it for now.

Only we haven’t any good storage in this house, and it just ended up on the floor in our basement hallway. Fearing it would be damaged by flooding (the washer has been overflowing at times, and the one side of our home has been leaking, since when the new roof was put on several years ago, they removed all the gutters and downspouts so the water now comes into our home on one side) I moved things around and found space for it in our living room.

I would have used it then, only I didn’t know where she had put the cords and attachments, and didn’t want to go through her things looking for them. I asked my husband to – this was maybe a year ago – but he never did.

I also asked him to NOT use the piano for storing his things as he came in the door – but of course he does. Of course he does. He doesn’t understand me. He doesn’t understand my need for him NOT to do those things.

Anyway…

Another niece who lives in town asked, since we aren’t using it (I would, only my husband never did find out where the cords and attachments were, so I couldn’t) if she could take the piano to use. I don’t mind her taking it. It would give a place where I could bring my keyboard out and actually be able to use it (so long as my husband doesn’t store things on it, which causes me a lot of distress) but I still don’t know where the attachments are. She would need them to use it, too.

I tried.

I tried so hard to explain to him that in order to use it, she would need to ask our other niece (her cousin) where the attachments were, but…

He never seems to understand me.

He never does.

The longer we have been together, the less he seems to hear. It makes me want to cry. It does make me cry.

“(Her husband) is a really smart guy,” my husband told me. “He can figure it out.”

Okay, so I am stupid for not being able to do this?

It isn’t about being smart, or about being able to understand construction, or electrical systems, or… “She needs to ask where the parts are,” I said… but he didn’t get it. “C can figure it out,” he said again.

Excruciatingly frustrating!!!

It isn’t about being smart. I am smart enough to know that what they need is to ask where the parts are – not to figure out a way to not need those parts.

Sometimes he makes me feel like he thinks I am so stupid – when he is the one not understanding what it is I am saying. This is how people have responded to me all of my life – and I try so hard to explain. And it seems to me I couldn’t be more clear. And they think I am being clear – but then they twist my words, or interpret them to mean something they never did – and they are so sure they are right they don’t give me a chance. They just keep trying to correct my correction to fit in with what they believe I am saying…

But I am not! What I am saying is what I am saying. There is no need for interpretation. There is no need to ‘look between the lines.’ It is all right there, clear as day. I don’t know why they can’t understand.

I don’t know why they respond to me as if they think I am stupid. I am not stupid. I know what I am saying – they are the ones who misinterpret.

They have always made me feel like they think I am stupid, and it hurts more than I can express – but he is my husband! He shouldn’t be making me feel that way.

And when they make me feel that way? I become so upset I shut down – which only goes to confirm for them what they believed about me in the first place.

So, so frustrating. So painful. So wrong.

Will they ever learn?

 

Tags: , , , , , , , ,

Autism: Hot Water

What was it I was trying to say?

An entire blog post to share that my husband had our hot water tank replaced, and I didn’t talk about that at all. So like me, I have to share all the small details to ensure that my story is 100% accurate with no room for misunderstanding (of course, it seems even with all that – or maybe because of all of that – I am frequently misunderstood anyway.)

So a post about my new hot water tank instead became a post about going swimming, and why (though I love it) I don’t do it very often.

We have lived in this house for 14 years (and nearly a month.) My husband bought it for us, with my input, when we were getting married. When we were looking for a house, houses were selling fast! This was the fall of 2003 just before prices jumped so much that we couldn’t have afforded to buy a house at all. We put our offer in for three other homes before we bought this one.

s551655900_225444_4621

One of the issues in choosing a house was that I was running a daycare at the time. There were many regulations to running a licensed in home daycare, and most of the houses we looked at might not have met the rules. I suppose it didn’t help that I knew that if I had to worry about everything my husband was doing in the daycare/house we wouldn’t have had a good marriage, so I was insisting we have separate space for living and childcare – and I never even considered that we could use the main floor for my business, and the lower level for our home… and the daycare had to have two exits, so… it took a lot of houses to find one that suited.

Okay, so this blog isn’t about my daycare either…

When we bought the house, it had a really nice, all one piece, bathtub. It looked very inviting, but I quickly found out our hot water tank wasn’t large enough or strong enough to get enough hot water for a bath (for adults anyway.) It was fine for little children, even when we had three having baths one after the other and another having a shower after that.

For myself, though, I could only get a couple of inches of water warm enough in the bottom of the tub before it was cold coming out of the tap. So for fourteen years I stuck to showers in this house. Great for getting clean and conserving water, but not great for soaking – and I have had a lot of issues with back pain, foot pain, and general aches… I could have used a bath.

But the tank had been replaced only a few years before we bought the house, and it seemed selfish to me to ask for a new hot water tank just so I could have a bath. No one else cared, and we thought we had enough hot water for everything else.

Turns out we didn’t have enough for our dishwasher either. We always got our dishwashers from the thrift store, so when the dishes weren’t getting clean enough, I just thought it was because they were second hand. Then another of a long line of machines we tried broke. There was no way I was going to pay hundreds of dollars for a new one that might only last a few years, so I started washing by hand. That is when I realized we didn’t have enough hot water for that, either.

Plus, the tank we had was nearly 20 years old, and we found out we would have to replace it anyway due to insurance reasons. So my husband agreed.

Now I am able to have a very hot bath – so hot I have to turn on the cold water about halfway through just so I don’t burn myself getting in.

And it is so nice.

I might not get the exercise that I would get from swimming, but it provides for all other benefits without all of the effort.

  • No leaving home.
  • No crowds.
  • No wet clothes to deal with after.
  • No chlorine (well not nearly so much anyway.)
  • No extra shower after.
  • No pre-booking transportation
  • Very little pre-planning.
  • Lots of calm!

Besides, I can get my exercise in other ways without having to go so far from home.

 

Tags: , , , , , ,

Autism: Horrible Stinky Food

My husband made hamburgers for himself in the toaster for supper. I did notice he was going to do that, but he doesn’t like me to comment on these things, and… what was I supposed to do?

004

On the nights that he cooks, I frequently have to wait until supper is finished for him and my son before I can start to make my own – and that in itself is very hard on my system. That isn’t his fault – I just can’t function well with anyone around, including my husband. I do okay with my son there, but my son has been there since he was a baby, and that is not true of anyone else in my life – which is maybe why my son is the only one who doesn’t have such an effect on me.

Oh – I guess I should mention that I am the only one in my house who doesn’t eat meat. I also have a lot… a LOT!!! of sensory issues around food, so what people typically eat (in Canada – but I imagine many foreign foods would be bad for me, too) is not only something I can’t eat, but something that causes me a lot of struggle when other people eat these foods around me.

Hamburgers are one of those foods.

If they are cooked on the barbeque, and the doors are closed, it isn’t so bad. The smell goes away pretty fast, and I can cover my nose while I wait.

Inside, however, is very different.

It stunk up the house so bad I couldn’t block it out with three layers of blankets. My husband, seeing my distress, sprayed room freshener (which made it worse) burned candles, and opened the windows. It still took more than 1.5 hours before I could take the blankets away from my nose.

Molly, (one of my Chihuahuas) stressed out by my struggle, barked at my husband (which she doesn’t do) until I brought her to me and calmed her down.

My functioning, reduced to nothing since I was unable to eat my supper due to my husband’s choice of his (and I begin crashing when my meals or snacks even are even a few minutes late – and this was getting close to 2 hours) left me unable to find food even when the smell had cleared, and my husband had cleaned the kitchen.

Knowing it was nearly time to get my girls ready for bed, and I had to do something, I walked into the kitchen – but I ended up rocking on the floor unable to think. Clara (one of my dogs) and Ditch (one of my cats) came to help comfort me.

I couldn’t deal with my needs, but they needed me, so I got up and got them through their bedtime routine.

I ended up eating a granola bar (which hurt my tongue) two pieces of dried mango, and the tea that my husband brought to me. It wasn’t nearly enough. Not nearly. But it was close to 10pm, and was too late for me to eat – besides, I still couldn’t think of food.

For me, it isn’t true that I “will eat when (I’m) hungry enough.” The truth is, the hungrier I am, the harder it is for me to eat. Even foods that usually work for me are rejected (in my thoughts as well as my mouth, throat, and stomach) when I am too hungry. Foods that are often okay for me frequently cause a very bad reaction if I eat them in those moments.

So I went to bed feeling hungry and weak. I woke up the next morning (having only made it through the night by medicating myself) feeling hungry, nauseous, and weak. In fact, though I did eat that day, it still took me until after I had eaten supper and dessert – a full 24 hours after the issue began – before my body was regulated and felt okay again.

It is really hard on both me and those who live with me when normal things that they do has such a bad effect on me – and what am I supposed to do with that?

 

Tags: , , , , , , , ,

 
%d bloggers like this: