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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: 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?

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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?

 

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Autism: Give Me An Out

I woke up with such a bad headache (this has been happening a lot lately) that I didn’t think I should go to church, but it dulled as the morning went on – and really, I would rather go than not, even when I don’t feel like it.

When we get to church, we often say “hello” to a few people, get our sermon notes, and go to our seats. While my husband might stop to visit, that part of the church at that time very quickly puts me in sensory overload.

  • The fan running above me.
  • The doors opening and closing.
  • People all around me.
  • Open spaces.
  • Lots of voices.
  • Children running around.
  • Sights, smells, sounds… it is all just too much.

And when I have to stand in there – which is true of any such space (I hate being in warehouse stores for these reasons even more) – I quickly start going into meltdown mode.

Mostly my husband recognizes this and gives me an ‘out.’ He might stay, but I am able to comfortably excuse myself and go.

Perhaps on this occasion it slipped his mind how hard this was for me. Maybe he thought he would only talk for a moment, and it would be okay. Possibly it was because on this Sunday there were fewer people in the foyer when we got there.

Easter 2015

Whatever his reason, I found myself ‘trapped’ there in that foyer with no polite way I could find to excuse myself. We stopped to say “hello” to one couple, and he ended up staying to tell a long story about how his jaw was broken. To include me, I suppose, they kept looking at me while he told the story, and I couldn’t get away.

It wasn’t about his story, or about the couple we were talking to (or he was, anyway.) In that type of situation I am being bombarded by all sorts of sensory stimuli, and I can’t block it out. It was all I could do to try and hide how irritated I was getting.

Finally the story was over, and we started to walk away. I thought I might be okay, though I was still struggling. We only took a few steps, however, before he stopped to talk to someone we didn’t know.

She had just moved to town a few months ago, and was new to the church. My husband was trying to make her feel welcome. I know we are supposed to do that, and I saw the value in it as he was speaking, but… I was already doing pretty bad, and wasn’t able to handle any more.

I know that I didn’t do as good a job of hiding my irritation – and again, it wasn’t about what my husband was saying, or about the person he was talking to. I was feeling trapped and overwhelmed, and could find no polite way to escape.

So the irritation, I am sure, showed loud and clear. I was crossing my arms and hugging myself as I do when I feel that way. I was looking away, trying to block things out, shifting from one foot to another… I am sure it didn’t help her to feel welcome, but it certainly wasn’t my intention to come across that way.

Really, it was all I could do not to go into full meltdown, crying and running away, right then and there. Of course, she wouldn’t have known that. She wouldn’t have ‘known me from Adam,’ as they say (or should it be Eve???) and certainly wasn’t aware that I am Autistic. It isn’t like I have a neon sign on my forehead announcing that.

So instead of seeing that I was in sensory overload, and needed to get out of there, I am pretty sure that in her eyes, I just seemed rude.

Finally that conversation was over, and we went in to our seats – but I was crashing hard! My husband tried to talk to me about other things. He tried to hand me my sermon notes to read over. He tried. But I couldn’t. I was done. Like I said, it was all I could do not to cry and run away, and I was having such a hard time… I guess ‘regulating’ myself might be the right term.

Then the worship music came began, and the calm washed over me, and I was okay.

But I wish they understood how hard such things are for me and would always give me that ‘out’ I so need in these situations.

 

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Autism: Dressing Appropriately

It wasn’t exactly a cold day, but I had been getting sick. I had washed my hair, and since blow drying causes my scalp to itch intensely for a long time after and I therefore avoid it most of the time, my hair was quite wet when we went out that night.

chilled

Already feeling chilled, and knowing our seats were near the ice of the hockey arena (my husband is given free tickets when his friend and coworker, who holds season tickets to the home games, can’t go) I decided to put on a toque and gloves, and was glad that I did.

My husband also wore his toque, as he almost always has on some type of hat when we go out.

So there we were at the arena dressed in a way that made sense to us. In between periods we get up and walk around the arena – it is good for exercise, and a good way to spend the time.

On one of our rounds, however, a man stopped us. We didn’t know these people at all, wouldn’t recognize them to see them again, and I can’t see how what we were wearing had any effect on him – but he stopped us and seemed sincerely upset that we were wearing toques on that night.

He turned to his wife and asked her if it was cold enough for the way we were dressed. She said no, but that she thought our toques were ‘cute.’

He shook his head and mumbled as they walked away and I thought, “what does it matter to him how we decided to dress?”

It isn’t like we were naked, or wearing the other team’s jersey, or walking into a sauna dressed for winter – yet he was quite upset and I don’t get it. If he could get so upset over something that didn’t effect him in the least, how would he respond to something that was actually important?

It is true that I don’t often have any clue what other people are wearing. Even when I try really hard I can hardly ever keep in mind what people have on from the moment I turn away – I just don’t see it. That has always made it near impossible for me to dress in a way that I ‘fit in,’ and by the beginning of high school I had even given up trying.

I am, however, very sensitive to the weather. Hot, cold, wet, windy… I feel all of these to the point where if I am not dressed appropriately for the weather, I am completely fixated on that discomfort (read: pain!) For that reason I am very conscious that what I choose to wear is comfortable for the situation.

While I was in the arena – chilled, near the ice, getting sick, and with wet hair to boot – I was thankful that I had decided to wear my toque. It was only after this… interaction, that I became aware that we were the only two people in the arena dressed so warmly. Still I don’t understand why that mattered to much to him.

By the time the game was over (‘our team’ won 7:4) the weather had turned. The wind was blowing hard, filled with rain that even looked like snow up above us, and it was cold! So cold that my teeth were chattering by the time we got to our car – and this man still had me questioning my decision to wear a toque to the game.

Ridiculous.

 

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Autism: I Don’t Eat Meat

There is this site I visit often in order to earn some points that can be redeemed for gift cards. Every day they have a poll which, upon answering, earns 1pt (which translates to $0.01.) Not very much, I’ll admit, but there are also other ways (such as taking surveys) to earn points, and they do add up.

Lately there have been many polls around food. It appears the states have a ‘national day for…’ just about every day – and a lot of it is food: donuts, chicken wings, seafood…

Anyway all of these polls come up, and many have been specifically asking what our favourite type of meat is. How do you like your chicken wings? (Don’t eat meat.) Which is your favourite burger place? (Don’t eat meat.) What is your favourite seafood? (Don’t like seaweed, don’t eat meat.)

Each of the polls has a list to choose from, and ‘vegetarian’ or ‘vegan’ has not been an option.

So for each poll, those of us who are vegan or vegetarian have been responding on the comments section, “don’t eat meat,” or “I am vegetarian,” or something like that.

What really got me, though, was how upset all of the non-vegetarians got with those responses.

“How do you know if someone is a vegetarian? They will tell you.”

And why shouldn’t we.

Someone even went as far as to say that vegetarians – especially people who used to eat meat – are a lot like ex-smokers in that they are very vocal about their distaste for something they used to consume.

Well… yeah!

For a couple of years in my teens, I was a smoker. I quit when I was pregnant with my son – and aside from 6 weeks during a very stressful summer a couple of years later, I never went back. I hated the smell of smoke before I was a smoker (I suppose I could write a post about what happened there,) and aside from the time when the cravings were still strong, I have had an even worse reaction to the smell of smoke (not just while someone is smoking, which is really bad, but also the smell that follows them after) ever since.

A person makes a choice to move away from an addiction, puts a strong effort into denying the cravings, and comes out the other side disgusted about the things they once enjoyed. But if a person has made a decision to move towards a kinder, healthier, more environmentally friendly, more sustainable lifestyle – why should others be upset at them for sharing their success?

“But that isn’t it,” they say. Today I read something about a person who had gone to a vegetarian restaurant. They were impressed with the food, but saw the servers and cooks as having an attitude of “we are better than you,” because they were vegetarian.  They left unhappy and disgusted.

That might be the case with some vegetarians – like it might be the case with some Christians, or ex-smokers, or… But did he ask them? My initial thought would be that perhaps that wasn’t what they were feeling at all. Maybe they were proud to work in a place where they are able to inspire people towards a kinder lifestyle. Perhaps they were happy that people were enjoying their food so much – when that isn’t always the case with any food that is different.

All I know is that I am vegetarian (almost vegan). I am Christian. I am an ex-smoker. I am many things that set me apart from ‘most’ people – but I have never felt “better than,” and if people ever thought that about me, it would be their mistake, not mine. Though I do believe these are kinder, healthier, better choices – but that doesn’t make me a better person (or less of a sinner) for choosing them.

People express their opinion that Vegetarians are trying to push their views – yet everywhere I go, and many of the things I see, people are celebrating around meat, and trying to feed it to others, and…

I don’t believe that Vegans or Vegetarians are better people – but I do believe we were given an extra strong dose of empathy to the point that we are unable to block out the pain, and the cruelty, and the… evil that exists in the meat industry. We can neither block it out, nor can we stand by without saying something,

  • as people spoke out against slavery
  • as people spoke out against the holocaust
  • as people spoke out against child abuse
  • as people spoke out against rape

As people have spoken out against all the pain that people bring to the world, those of us who have this in our hearts and minds must speak out; we must.

And really, is it more cruel for vegetarians to say, “I don’t eat meat,” or for meat eaters to mock, and joke, and exclude, and get upset with someone who is doing their best to be ‘a little bit kinder?’

July 2017 006

 

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Autism: Apologies

There is this thought that continues to creep into my mind that I don’t love my husband as I should. Perhaps that isn’t the best way to put it, as once written, I suddenly get a picture in my mind of shocked responses from the people who are reading it. I do love my husband. I even like my husband. But I still don’t think I love him as I should.

Easter 2015

The thought grew stronger after I had written my post about wet gloves. Though all I wrote was true, and reflected accurately my experience of the situation, it wasn’t… edifying is the word that comes to mind – towards him.

So I had this constant though in my mind that I should revise the wording of that post. I went away camping for a week, and all the time fully intended to alter it when I got back home, before its scheduled release the following Monday. When I got home, however, I re-read the post and concluded that it was an accurate portrayal of my experience, and to alter it would be… almost a lie. I couldn’t do that.

While I don’t think my response to the situation – though admittedly much more intense than other people might have responded – requires my apology (I stick to what I wrote, and what I felt about that) I do believe I need to apologize for the way he came across – not only in my post, but in my thoughts as well.

It is difficult for people to understand struggles outside of their experiences. It is difficult for people to be able to consider how what they do might strongly affect another person. Especially in terms of such things that most people don’t have strong reactions to – such as heightened sensory issues, or even allergies.

For instance, I have a severe egg allergy. Every year when I go camping, and other people are around, the others seem to have a really difficult time understanding the allergy. They want eggs for breakfast. Pancakes are cooking on the grill. They want to add eggs to a different section of the grill. They don’t understand why I ask them to wait until my food is finished cooking before they add theirs. It isn’t that they are meaning to hurt me, but that they honestly can’t see why this is a problem.

It is the same with wet rubber gloves. Most people do not have sensory issues to the extreme where a bit of water accidentally dripped inside of rubber gloves will cause a full meltdown. It isn’t that when such things happen people are intentionally doing something to hurt me. I know this. It still hurts, but I know it isn’t on purpose.

So when I wrote, I wrote from my experience. My sensory issues cause me pain. Real pain. So it possibly comes across as the person who caused me that pain maybe should have known better. Maybe should have understood. It isn’t… edifying.

The thought continues to come through my head that I don’t love my husband as I should. So how should I love my husband?

Unconditionally.

Yet unconditional love is hard. Really hard. Nearly impossible for an easily hurt, easily offended sinner such as I am. In fact, for all relationships I have had, there is only one person I can think of that I have even come close for – and that is my son.

When my son does something that upsets me; or does things I wish he wouldn’t; or does something that hurts me, or someone else, or himself; or takes the wrong path, or… in that moment what I want most for him is that he overcomes the issue and does better next time. What I feel is a strong desire to reconcile that drowns out all thoughts of pain, or hurt, or anything negative. “See what you have done. Overcome it. Let it go.”

I think everyone should be love like that. I think that is the love my husband should have from me. So I pray, “Please Lord, teach me to love my husband as I love my son.” And I say to my husband, “I am sorry for not loving you like I should. Please be patient with me. God isn’t finished with me yet.”

 

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Autism: Wet Gloves

The idea was that I would go and and wash dishes while my tea was cooling, and then take my tea, and my girls outside, where we would enjoy the evening as we did most nights while my mom was here. I have to be able to make plans like this, and when those plans are disturbed, it affects me strongly.

July 13 008

Affects me? Effects me? Whatever. The problem was wet gloves.

It may not seem like such a big deal to those who don’t understand, but for me to be able to wash my dishes, I have to use gloves. Dry gloves. For without gloves, or with gloves that water has gotten into, my hands literally feel like they are burning the entire time I am doing dishes, and for long after – like sticking my hands into acid, burning.

It is one of my major sensory issues – and one I work around by using gloves.

Well, it wasn’t my turn to cook yesterday, so I had to leave the kitchen for someone else to use (a very difficult thing in itself for me – and the only reason I go along with it is that when other people are here, I get paralyzed, and really struggle to make the meals at all.)

The meal that was made, was not something I would have made – and not one I like much as it is (though to be fair, most meals made here are not for me, since I am plant based, and the others aren’t.) In fact, this meal was one that only the person making it likes, and likes a lot. But it was messy, and used a lot of dishes, and… ended with water all over the counter, which got into my gloves, and brought me to tears as I set my tea down, and picked my gloves up to start on the dishes.

And suddenly everything was overwhelming, which brought me to a very teary meltdown.

Flipping rubber gloves inside out to dry the inside is not an easy thing to do, and not a fast thing to do, and I was very upset about my plans being altered (my necessary plans to get through the dishes which were overwhelming me to begin with.) As I was trying to flip them inside out, and they weren’t flipping well, I got frustrated, and cried out in that frustration as I shook the glove in the air to try and force the fingers out.

“What is going on?” he asked me.

“Someone put something wet on my gloves, and now they are wet inside,” I answered.

“Do you want a new pair,” he asked.

“This is my new pair,” I responded.

“Well, I am very sorry,” he told me.

Great. But do you understand? Do you know why this is so horrible for me? Can you even imagine? My tea is getting cold, and my girls are waiting for me, and I have all these horribly dirty dishes from a meal I didn’t even want that I have to wash by myself, and my hands are going to burn, and my mom is gone, and my children were taken, and…

Your response is telling me that you feel good about forgiving me for being so upset at something you did – and still you leave me to continue this activity that is now going to feel like I had my hands soaking in acid, or bleach because you didn’t think about my gloves being there on the counter (not even that close to the sink, and folded over to avoid getting water in them).

And I will be the one left with the shame of another thing that tells me I don’t deserve to be loved, and everything that goes wrong is my fault – even when it is something you did that hurt me.

And I just want to shout – “Don’t you think that maybe, this time, you are the one needing forgiveness?” And forgive you, I will – but please stop making me feel like I am horrible, and you are merciful, when you do something that causes me pain, and I feel the pain from it – how is that yours to forgive?

I realize it wasn’t done to hurt me. I realize that when you put the dishes there, or cut the vegetables there, or did whatever you did that got the inside of my gloves wet – it was more that the thought of the gloves getting wet never crossed your mind, than that you did it to hurt me, but…

I can also say that, though I have hurt many people in my life, and though sometimes that was a direct consequence of something I did – I never did it to hurt them, either.

I may fail more often than others, and I may hurt people more often than others (it seems my very presence often causes people more pain than they would have had without me) but I don’t think that should bring us to the point where I should apologize when you hurt me.

And I just want you to understand that things that might not seem like much to you, can cause huge amounts of pain and distress for me – and I am not wrong, or unreasonable to feel it.

 

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