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Autism: Autistic Parents

The question was:  What are the pros and cons of autistic people having children.

The pros and cons are likely different for each of us, as they are for NTs.

I had a son (at age 19 years 6 months 1 day.) I also ran a daycare for several years, and tried to adopt through child welfare (had the children in my home for 3 years, but never got finalization, and the adoption failed.)

Some pros: Good at maintaining a routine.

Good at making/keeping appointments.

Good with structured activities (reading, singing, crafts, games, cooking, etc.)

Good at teaching.

Read to my son every day (often many times a day) from birth until right before his 14th birthday.

Understood HIS struggles better than most people could, even though we are very different people.

Research! Whatever I am interested in, I research – which, when my son was little, was children. I researched so deeply that when I took my Early Childhood Education at college (when my son was 2–4 years old) everything was review, and I graduated with dean’s honours.

I took my son to playgroup, to the park a lot, to the children’s museum… I put him in soccer, swimming, cubs, youth group, had birthday parties (and I have severe social phobia, and parties are especially hard.) I made an effort like most parents do – and I absolutely loved/love all of my children.

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Some cons: It is very difficult for me to communicate well (especially long term) with other adults. I become more anxious as time goes by, which causes people to stop trusting me (I don’t trust others, with good reason.) This had a lot to do with our adoption failure (I wasn’t diagnosed until after – and it is likely they wouldn’t have allowed me to try to adopt if they knew, though I very much disagree with that.)

I research a lot, and write a lot – which overwhelmed other adults trying to work with our family (again in adoption.)

When I get overwhelmed, I shut down – like when my son was born, I was in shock for a couple of weeks. I took care of him, but couldn’t think or focus well. I could have used a lot more help there.

I get overwhelmed easily, and don’t do well at all without sleep. I could have used some help there (my son didn’t sleep more than 20 minutes at a time for his first year.) Many new parents are exhausted. Autistic people might need a lot more support to be able to cope well.

I get overwhelmed easily (I know I am repeating, but this is the struggle.) So when we had 3 high needs foster kids, plus my undiagnosed autistic son, plus myself – I could maintain OUR schedule most of the time so none of us were falling apart, but then we would have the social workers step in and ask to do several things at once because it was more convenient for them – we would all end up falling apart after. Too many appointments at once, people not understanding our need for routine (which is good for children) can cause failure. It is a con. This is on me, I see that – but some understanding in this could make all the difference between success and failure. Again – support. Someone else to deal with an overabundance of appointments/understanding to ensure not too much is asked at once…

When I am overwhelmed, I can’t do everything. I could take care of my child, but for a long time could not keep my apartment clean at the same time. Later I could take care of my home and child, but having to work on top of that was too much. Too many appointments = too much. A lot of life is “too much.” Extra help and supports are often needed for success – as well as understanding that we can’t do it all, though many parents are expected to.

Social skills. Likely someone else will be needed in the child’s life to deal with important social events. As I mentioned, I took my children to a lot of activities – in my mind. The social workers said I was isolating them. I still don’t understand that as we went out a lot – and the summer they said that, I drove across the country, and took my children to visit a lot of family, and go on a lot of outings. I wasn’t diagnosed at the time – if I had been, I might have accepted that I have a ‘blind spot’ in this area. Having someone else to plan birthday parties, play dates, help communicate with teachers and specialists, etc. would be important for the children, and helpful for an autistic parent (so as not to overwhelm them.)

Sensory issues. I have a lot, and many surround smells and foods – especially foods. Personally I could deal with changing messy diapers. I got really fast at this with the daycare, and would NEVER leave a child in a mess – but that is because I am hypersensitive. Someone who is not so sensitive might need help in keeping the children clean. For foods, there are many I can’t have around me (boxed Kraft Dinner – generic included, mushrooms, hamburger, eggs – I am allergic…) For children to have some of these experiences, it would need to be apart from me. That doesn’t mean I couldn’t be a good parent.

Fixations. Rules. Okay… especially when anxious (made worse by judgmental people who don’t understand) I have a really hard time being flexible around rules. For instance, when our children were placed with us, they had very strong attachment issues. We were told not to let other people watch our children, or give them anything (toys, food, etc.) for at least 6 months to allow the children time to settle. So that is what I did – and everyone got upset with me.

Or there is the fact that I can see connections that other people don’t. When my children had sugar, for instance, I could feel it coming off them in waves – even if no one told me they gave it to them. Sugar strongly affected their behaviour, and made things harder, so I didn’t give them sugar. Ever. The same goes for wheat (not gluten, just wheat.) I sweetened with applesauce, or rice syrup, or something. I gave them other grains – rice, millet, chickpea, quinoa… but NEVER wheat.

I got in lots of trouble for that, and others saw it as being rigid and controlling. Perhaps it was – but… understanding and support can go a long way. Understanding that many autistic people can see patterns and connections that other people are unaware of (so don’t dismiss what we are experiencing even if you don’t see it.) I requested a dietitian. Some understanding and support could have gone a long way in getting all of us through this – whether we ended up giving the children sugar and/or wheat, or they provided better alternatives. We (autistic people) tend to get ‘stuck’ in our rules. We see why they are there, and the more attacked we feel, the more ‘stuck’ we get.

It might take more outside support, and a lot more understanding for Autistic parents to succeed – but we can do very well as parents (even thrive) with the right supports and understanding. In fact, being a parent was the single most fulfilling experience of my life – and losing my children through adoption failure the single most traumatic.

In conclusion I believe people with autism can make excellent parents – with good supports and understanding in place – and having children can be such a positive, growing experience for (some) autistic people that I believe it is tragic to deny (us) that experience rather than provide the supports needed for us to succeed.

 

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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.)

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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.

 

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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.

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Autism: Train Crossing

Well the day came, and since I didn’t have the bus booked I had to take the van. Well, I guess for that part I would have had to take the van anyway, since we only book the bus to take us home. After all, if my husband is going into town anyway, why would be spent $3.50 in bus tickets to take us to the same place at around the same time?

My husband had offered to take us home after, so I wouldn’t have to return (in the dark) at night to pick him up from work when he was done. I don’t like driving in the dark. I don’t like driving.

This was the day I had set aside to do all of my Christmas shopping… well, most. My son was coming with me, so I would have to pick up things for him on another day. Everything else had to get done. When would I get another chance to do it?

I have really been struggling with Christmas this year. All the commercialism makes me feel sick. I look in the fliers and they seem to be telling us that we should be spending hundreds of dollars on each gift (if we really loved our family!) Hundreds! What ever happened to the $20 maximum for the closest people in our lives? Or better, the orange, Christmas candy, and mittens that used to fill stockings a hundred or so years ago.

When did Christmas become about going into debt?

The more I look in these fliers, the more I hate the idea of buying anything. Such pressure. Such greed. This is not what Christmas is supposed to be.

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But like most other people I do have people to buy for, and I don’t want them thinking I don’t care about them. So I went out looking.

As I left the thrift store where my husband works, a train started going by on the tracks we had to cross to get to town. I was first at the stop sign on my side – needing to turn right to cross the tracks. Across from me was the Handy Dart – the bus I had planned to book to get us home. It was being driven by a person my son and I both know. She was first to the stop sign across from me, and had arrived there before I had.

On the road perpendicular to us – the one that crossed the train tracks – there was no stop sign, and there were several people stopped at the train crossing there.

I was sitting there, in the driver’s seat of my van, panicking for two reasons:

  1. Knowing who I was, the driver of the Handy Dart would recognize me sitting in the driver’s seat of my van, and question how I qualified to take the Handy Dart (to be fair, in my application for this bus I did say that I could drive, but that it causes me a lot of anxiety, and I still was approved.)
  2. I struggle with the rules for a two way stop where there is no stop sign in the other direction. She was there first, so I wanted to let her go first – but she was turning left where I was turning right, and in such situations in the past the people turning right went first regardless of who got there first…

Perhaps I shouldn’t care what other people think of me, but I do. I care a LOT! So it bothers me when I think that other people might think that I don’t belong somewhere, or shouldn’t qualify for something, or…

My son said that if anyone had been in the van with us, they would never question that I should qualify for the Handy Dart (he has also said that in the past while we were standing outside the thrift store waiting for the bus, and I was so anxious I couldn’t think – to be fair, the bus never showed on that trip, so the panic was justified – I ended up having a full meltdown then.)

Anyway, I hesitated for a second, and when she didn’t go, I did. But the panic never let up.

I wanted, and had planned to get all of my Christmas shopping done that morning, but after the experience I had waiting for the train at that stop sign, all I wanted to do was be home with my girls. We did go to every mall in town (we live in a small town, so when I say mall, there are only a few stores in each) but I didn’t get any shopping done.

I couldn’t.

And the rest of the day I was anxious, teary, and emotional. Sometimes I think I shouldn’t be driving at all. It is all just too much for me.

 

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Autism: Sometimes I Can’t

I had the best of plans for the day. I even knew in enough advance that I wanted to go that I could (should) have booked the bus, only…

On the Monday, the day I was supposed to phone, we were waiting for a visitor. We. My husband was home. I was glad he was home because I had a visitor coming, and I struggle a lot with such things. He helps. Only when he is home I can almost never do… things. Like housework, or phoning people.

Phones are hard for me. Really hard.

When I have to make a phone call, I need complete silence. I rehearse over and over what I am going to say in my head, and I write it down just to be sure, and I panic before I pick up the phone and dial. I can’t do that when someone else is around, and my husband was home from work that day (having switched days off with a coworker that week.)

So my husband was home, and that was difficult – for making the phone call at least.

And we were waiting for a visitor.

It doesn’t exactly matter who the visitor is, or how long they are going to stay, or what they are coming for – expecting someone to come to my home causes severe anxiety for me. Another thing that is really hard.

Sometimes it is worth it – like when my friend comes over every other week. I like visiting with her, and I know exactly when she is coming, and exactly how long she is staying. Though I still panic before, and crash after, I am always happy that she came.

Other times the visit is necessary, like when I have people coming over to fix my windows, or install new light fixtures, or… then, though they may only be at my home for half an hour, and though I might know approximately when they are coming, I still panic before and during – and though it is a short part of my day, I am exhausted for days after.

Then there are times like these. The visitor was the previous owner of all three of my dogs. When they gave us Misty-Grace, they asked my husband to keep his eyes out at work (the thrift store) for dog blankets, cushions, and such. They run a kennel, and have multiple dogs of their own. So we had collected a large stack of such things for them – and they bought a sleigh for us (one of the wooden baby sleighs for walking on the snow – since my dogs frequently prefer to be carried to walking.)

He was coming to exchange the items and see my girls. It was fine. I was happy he was coming, but anxious and panicky as always. We didn’t know when he was coming. He was driving from out of town, about an hour away. We didn’t know how long he was staying.

So we waited. And as I waited, knowing I was supposed to be making this phone call to book the bus for a trip I already knew I wanted to take, my panic grew.

In that level of anxiety, I can’t function. I couldn’t make the phone call. I couldn’t do anything at all. I was dizzy, and numb, and panicky.

By the time he arrived, it was 4 in the afternoon – and the bus place closes at 4:30. I knew through the day that I should be making the phone call, and I kept looking at the phone and trying to work up the courage, but I just couldn’t do it.

I had to do it. I wanted to do it. I remembered it needed to be done. I knew what I needed to ask for. And still…

Sometimes I just can’t.

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Autism: Smoke and Panic

The last couple of logs that I put into the fire in the morning didn’t burn well. While I was making supper, I kept smelling smoke. Finally I figured out that it was from the logs (our fireplace doesn’t tend to smoke, so this was highly unusual.) So I moved the logs around, but the upstairs was still all smoky.

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My husband looked into the fireplace when he got home, but didn’t see anything wrong.

I guess the bigger challenge was that I had only just realized that our wired in smoke alarms weren’t working (I wonder how long ago that started!) We didn’t even have backup battery operated ones that worked, so my anxiety was very high.

After all, I have known a few people whose houses have burnt down. My grandmother was one of them, and though the people were all out of the house at the time, she lost all 5 of her cats in the fire, and burned her hand when she tried to open the door to get them out (she was just arriving home when she saw the fire.)

If my animals died in a fire, it would be a trauma I would not overcome. It would hurt me for the rest of my life. This I know.

Well, the smoke filled the upstairs enough that it aggravated my throat through the night. That, mixed with my panic about the smoke alarms, set me into a panic that made it very difficult to get to sleep.

It was about 1am before I slept, and has been happening for about 2 months now, I woke up at 3:45 am unable to get back to sleep.

Though I am sleeping little, doing little, and functioning very slow, the days are flying by.

I feel detached from the world, and disoriented from the speed – like the roundabouts they used to have in the playgrounds when I was a kid (before they regulated the speed they were able to spin.) I feel like I am watching the world spin and waiting for my opportunity to jump on – but it is too fast, and I get dizzy just watching it.

 

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Autism: Created to Be

When I left, I felt really good. I was decently calm (I never am fully calm when I have anything to do) and even wanted to be out visiting; which is very unusual for me. I talked to people, and smiled, and then…

It wasn’t part of what he had planned to say, but he made a comment about ‘human people,’ which lead him to start talking about ‘dog people.’ You know, like “human people… I don’t know why I said that. What other kind of people are there… unless they are dog people…”

So then he went to mention that they were not people – dogs that is – or your babies, or…

He made it sound like a joke, and lots of people were laughing. Some were even clapping, which doesn’t happen frequently.

Then he said he thought it was a gospel problem, and he could write a whole sermon about it. Then he went back to what he had been talking about before he got distracted.

The whole thing maybe lasted 2-3 minutes – but it caused me struggle for the entire day. Not even a little bit, I was fully triggered into severe anxiety and depression, which were very difficult to overcome.

My babies are my source of joy. A level of joy I have rarely experienced in my life. They are… if not healing my loss (which isn’t likely to happen this side of heaven – the pain and trauma and triggers are all to much) they are at least helping me to go forward.

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They are an answer to my ache for children, for family, even for friends – which people took from me over and over again.

They are my tie to sanity, though I have to let go of some to keep the rest.

They are not people – and I am so thankful for that! But their place in my life as my ‘babies’ is essential for so much of my life it would take all day, and maybe even more, to explain it (and even then most people wouldn’t understand it.)

It was a joke, but still I worry that people are coming to take even this away from me. And why not? They’ve taken pretty much everything else. And it makes me want to hide again, and not go to church, or write, or go out, or be seen, or share myself with anyone ever again – much as I felt when my children were taken.

And it was only my dog, who was given to me for that very reason, who could pull me through that. Then he died, and I was back there again. So I was given Clara, and a few months later Molly, and several months later Misty-Grace. They are my babies…

I went in happy, and left in pain. I am pretty sure he didn’t mean for that to happen – and while it may sound like I am venting about ‘those’ people who don’t understand, this is a man I both like and respect. Perhaps if it weren’t so, it wouldn’t hurt so much.

It is just another thing wrong with me.

I was upset for a long time after until… the sermon series we have been on is titled ‘God Still Speaks.’ And this I believe. I was upset until God reminded me through thoughts that He gave me my dogs, and He gave them to me for this very purpose. He gave me this heart for animals, and it is a gift – not a gospel issue.

This love I have for my babies is a strength, not a weakness, and this is an essential part of who I was created to be.

 

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Autism: Slipping, Sliding, Panicking

Speaking of snow…

As long as I was able to stay inside, and was comfortable sure that my husband was still at work, I was content and even feeling thankful for the weather that day.

But then it was time to make supper, and the anxiety grew. Suddenly my mind became fixated on the fear that my husband would not make it home on those bad roads. It didn’t help that one of the main characters in the show I have been watching died in a car accident (though it wasn’t snowing there.)

What would I do?

How would I live?

Who would I have to call?

How would I manage?

There are many things that my husband takes care of that would be a real struggle for me, and…

I am a worrier, and the roads were very bad. I was watching the cars sliding around on the relatively flat road outside of my window – and the way home from my husband’s work is full of steep hills and twisty roads, and…

I am not one of those people who believes that bad things can’t happen to me. Of course they can, and they do, and… just because this hasn’t happened to me before doesn’t mean it won’t happen to me now.

So the minutes ticked by, and my anxiety grew.

He did come home (this time) but then we had plans to go out that night. I looked at the roads, and thought maybe we would cancel. Better to stay home and be safe than to leave my girls, get killed in an accident, and have them never understand why I didn’t return to them, right???

My husband wanted to go, though. We were going to the local theatre to see the play, “Romeo and Juliet.” This was the only night we could go as it was a pay what you can night, and the regular price was just too expensive for us.

So we went.

We did slide around the road several times, and I was panicking all the way there and back. As I tend to, I kept trying to pray quietly – but my husband, perhaps trying to take my mind off of it??? kept talking and cutting me off (though he didn’t know that of course.) Maybe he thought that continuous talking would be calming for me, but instead it made it worse. I really needed silence so I could hear myself pray.

Anyway, we made it home safe – and the show was really good, so… “All’s well that ends well,” as they say.

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Autism: Future Blindness

I dreamt my son and I were doing some type of concrete forming on top of a highrise. We had to climb ladders in precarious positions to reach our work, yet even standing on the roof terrified me. I felt all the time as if I were sliding off, so I was lying down holding onto anything secure within my reach (so of course not doing my job.)

My son, on the other hand, was climbing on the ladder, and walking on the ledges 20 stories in the air as if they were nothing.

True to me I was panicking for the safety (or lack of) for both of us. I am sure the dream was the result of seeing a contractor climbing off a roof onto a ladder while my son and I were out for our walk the day before. I couldn’t watch, it scared me so much.

Now I know my son is not fearless – not like in the dream. He would never be found willingly climbing such heights, walking on ledges, or even doing that type of work. For a while however, I thought I could do… maybe not work on highrises, but construction of a sort anyway.

I had myself so convinced that I could do it, and would even like to do it, that I took two trades courses at our local college: A 12 week gateway program, and a 6 month Residential Construction foundation course.

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Yet I was so afraid of heights that I would cringe when other people in the course were climbing ladders, or walking floor joists or walls. I was afraid of the heights. I was afraid of the tools. I was generally afraid of the entire construction process.

I don’t know how I could ever have convinced myself that it would be a good career for me except that… I can’t see forward.

The older I get, the more I realize this.

I have a great imagination, and I am very good at dreaming things up, or picturing what situations might look like. I am also very good at seeing all that could possibly go wrong. The trouble seems to be that my imagination doesn’t take into account how I might experience these things.

Also, when I convince myself that something might be good for me, I have to block out thoughts of any fears that might come with it. I am always afraid. I am afraid of everything. So in order to convince myself that I can do anything, I also have to block out all thoughts of what could go wrong – which I am able to do so long as I am not actually in the situation I am dreaming up.

It is like any other fantasy that I dream up – like something impossible. As if I am as likely to be able to create a portal to another part of the country, or learn to fly (without the use of tools) or to alter reality with my mind as I am to get a job in construction, or adopt a sibling group of children, or…

So long as it is just an idea and not part of my reality, I am fine – but once I am actually a part of it, all of my fears, and failures, and limitations stop me from actually being able to continue on.

This makes it very difficult (if not impossible) to consider what I could do with my future as a job, or any other part of my life. Without the physical experience, I have no clue what would ‘suit me’ even enough that I could be successful in it – and now, after all of my failures, I am too afraid and exhausted to try.

After this I went on to dream that my son and I were in a cave with several other people sorting and categorizing turtles, and even naming them. This dream was definitely also connected to our walk the day before in which my son told me that the German word for turtle translates to ‘shielded frog.’ (My son has been studying German through the site Duolingo for several years now.)

 

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