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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: 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.

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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.

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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.

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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.

 

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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.

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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?

 

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Autism: Unexpected

I wish I had brought my camera, just… it was so unexpected! The whole thing, really. I am not even sure having my camera would have worked, however, as I didn’t even think of it until long after. Plus… they wouldn’t have liked it.

First off, my son doesn’t like the cold. Unlike me, he likes dark and rainy days, where he doesn’t have to go outside. If he didn’t have to shovel, I think he might even like the winter. But his circulation is bad, and he gets cold fast. So he doesn’t like the snow.

When the weather called for snow last week, therefore, he announced that we wouldn’t be going for our walks again until spring. That made me sad as it seems we just started again after the heat of the summer (which is even harder on him than the cold.)

It was then surprising when he asked me if I wanted to go for a walk this morning (of course I did!) We got all bundled up, and out we went. The thermometer said it was -7 Celsius when we left the house.

The nature trail is about a 5 minute walk down the street from me, if that. We cross the train tracks and go through a gate, and the trail leads along the lake-shore into town. It is such a nice walk that we hardly ever choose to go in another direction.

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As we were walking and talking on the path through the snow, I was reminded of similar walks with my older brother when we were young.

“Was it next to the train tracks?” my son asked.

“No.”

“Was it by the water?” he questioned.

“No.”

“But it is the trees, and the snow, and the leaves,” I said. “Like the forest beside my grandparent’s house that we later bought. It feels the same,” I explained.

As we walked I suddenly saw a deer on the lake side of the trail, hopping.

“Did you see it hopping,” I asked my son, hopping up and down.

“Shhh!” he said, “You’ll scare it.”

“Right.” I usually remember that, but I was so excited. We have seen deer around often, but never on the trail. We quietly kept walking, and very quickly saw another deer up on the tracks on the other side.

It stopped and looked at us, and we stopped and looked at the deer. I silently prayed that it would know we weren’t going to hurt it as we continued on our way. It watched us pass, and whenever I looked back, it was still there. The other deer had run ahead, and was up on the tracks in front of us. I prayed that a train wouldn’t come before they had a chance to carry on (and the next two trains to come were running very slow, so all was well.)

Further up my Pastor met us, running in the other direction. He said ‘hello’ to me, or… I think he asked how I was doing or something. I responded, and realized he likely didn’t recognize my son – the last time my son was in church he looked very different. Afraid my Pastor would think I was with some strange man I quickly said, “It’s (my son.)” So that was okay.

As usual, we walked to the bridge (about 1/4 way along the trail) and then went back, passing my Pastor again along the way. That was a great walk!

My son was cold and tired as we headed back home. He once again told me he wouldn’t be walking again through the winter.

“But if we hadn’t gone, we wouldn’t have seen the deer,” I told him.

“But now we have seen the deer, so we don’t have to go back,” he replied.

Oh well, it was a good walk anyway.

 

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Autism: Introducing Grace

As predicted, the snow fell today. The first of the year. I woke up to a winter wonderland and it left me feeling… content.

Though his alarm woke us, it takes me a long time to get up (often about an hour,) and my husband had the fire going and the tea made before we even got down the hallway… ‘we’ being my girls and I.

The girls don’t like the snow. They sat in the doorway shivering before two went out running after someone on the street (they can’t actually make it there as we have a fence in the way.) Immediately they regretted their decision and came running back.

“Take us in please, mom,” they pleaded, looking as miserable as they could though they had been out less than two minutes, and the temperature was hovering around zero. They jumped in my lap as soon as I sat down, and buried themselves in the blankets.

The next few times I went out for more wood they wouldn’t even come to the door. I came in to find Clara trembling. No way was she going out there again. “Please don’t make me,” she begged. Thankfully I didn’t have to – they have their indoor pads, though I worried that my youngest wouldn’t know to use it.

We only got her 6 days ago, after all.

She is learning from the others, but she is still not quite sure – and until now she was able to get enough time outside to go there.

It is true that I didn’t need another dog. I didn’t even feel I needed the second until she got here. In fact I was quite sure in the beginning that we were okay as we were. Clara loved having me all to myself. She is my ‘baby’ and let me know rather quickly that she wanted to be treated as such – carried around, showered with love, talked to, sung to… I needed her. She wanted me.

We were doing great, and any thoughts of ever getting a second dog disappeared as I watched her lunge at every other dog that passed us. She didn’t like one of them – and she was so tiny and cute (before she started growling) that people and dogs were all drawn to her… in the beginning.

I was okay with ‘just’ Clara. But then they asked me to take her mother, too. I was sure they would back out, or find someone else, or… it took me a long time to give them an answer, and I was afraid all along. But the moment Molly came into my home I knew she was a good fit. Such a sweet, cuddly, trusting girl – and Clara? From the beginning the two have been inseparable, like twins. And Clara is so happy Molly is here that she can hardly stop licking her.

But did I really need a third?

The girls have been doing so well, I certainly didn’t feel another could possibly be a good choice, but… she was Molly’s baby, too. She was Clara’s younger sister. Most importantly, knowing my girls, I knew the other interested homes would not be a good fit for her – and their ‘owner’ knew that, too. Those families worked full time, and were away a lot, and there she would be (after being raised in a home with at least 10 other dogs around all the time, and people home constantly) alone for more than 8 hours a day.

My girls cry when I leave the room a lot of the time, and become stressed out if I go out even a couple of days in a row. It wouldn’t have been great. They offered us some incentives to take her and I fearfully agreed… and then she came. My girls accepted her right away, and right away she became another of ‘my babies,’ who bring me more joy and contentment than just about anything else in my life.

So did I need a third dog? Absolutely!

I think I will call her ‘Grace,’ for God has blessed me so much more abundantly than I deserve, and I am so thankful for her.

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Autism: To Dream Again

This morning was “The Summit” church service at the wharf – were once a year all three campuses and five services of our church get together for church, worship, and lunch after.

It rained a lot yesterday – which is kind of a big deal since we had a drought all summer with only half an hour of rain in about 2.5 months. Today was sunny and the skies were clear (which also hasn’t happened for much of the summer.) It was a nice day for outdoor church.

While I was there I once again noted something that surprised me. I was watching the parents with young children, and the older children at the awkward stage, and was surprised once more to acknowledge that I don’t want children.

Stressful, exhausting, difficult…

It is a foreign concept to me to not want children. Until a little over a year ago, even after years of infertility and a traumatic failed adoption, having children of my own was the main desire of my heart – even though I did have, and raise, and still have, my now adult son.

I would see other parents with their children and felt… envy, and sadness, and… lost, alone, forgotten. Other people had families – why couldn’t I?

It was another, and a major, characteristic that separated me from them – and I hated that separation. I still hate it, maybe, but at least I can see what I couldn’t see then: Children are overwhelming.

Beautiful, and fun, and worth the effort? Yes – but…

Children call attention to their parents. Always. You see the children, you see the parents – and there is advice, and there is judgement, and there is a lot of stress that comes with the job.

And I can’t be watched.

As I sat watching the parents dealing with the children I remembered that. I can’t be watched, and children call attention to their parents. Always.

I can’t be watched, for when I am watched I operate from a different part of my brain which significantly drops my functioning level to the point where I pretty much always fail. So having children – no matter how much I wanted them and loved them (and I did) – was a recipe for failure. There was no way beyond it for I can’t function when I am watched, and parents are always being watched.

As I began to accept this revelation – which has come to me in the past, but I always fought against (“if I could only try harder, or do things different, or research more, or… maybe I could” – but no, I can’t function when I am watched, and whatever else a parent faces in raising a child, they are always watched – and if they don’t want to be watched, there must be something really wrong with them, and they shouldn’t be trusted with their children to begin with; right?)

As I began to accept this revelation I began to realize that if it weren’t for the memory of the trauma of losing ‘my’ children, and without the fixation of a lifetime of wanting children (possibly because that, in my eyes, was the measure of success and ‘normalcy’ – to be a ‘good parent’) I might even be able to admit that I am happier and calmer with my life as it is now.

The traumas are there, and they do cause me to struggle a lot of the time – but this thought that I could live okay without children… it is mind blowing. It is to turn completely in the other direction, and accept that it might be possible to dream again.

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