Conclusions about self

[PeterPan]

Ok, so we went to the speech therapy practice where we were for 8 years (through location changes, but whatever) to update some language testing, and as we turn in ds makes this comment about being (I forget what) and that was why he went there. Maybe he said broken, messed up, different, I don't know. I don't even remember what the context was. It's just clear he's becoming aware that he's doing stuff other kids don't do and don't have to do and he's starting to wrangle with what that means about himself.

I can't change that he has needed therapy and will benefit from more. Like we can make some kind of argument about oh just drop it for psyche, but there are consequences to that. I'd like him to get his /r/, have more conversation work, finish learning to write (the VMI work I'm doing is going very well btw), etc. He's also getting music therapy. And maybe all this is more glaring because we're getting services at the autism school? Other places we've gone to have been more homey and had more variety and less visible disabilities. 

I don't know if it's a question or a sadness. I think I get now why some practices do these stupid "graduation" ceremonies and give kids certificates. It has nothing to do with whether the kid needs more therapy or not, because for some kids it's probably more like the money ran out. But maybe it's like the mayor certifying you're now FINE and NORMAL? And what do you do when the kid is NOT??? There is no endpoint or certificate saying we're done, because he's just gonna go till he bucks it to the point where we can't. It's not like the need will go away. It will just dwindle into diminishing returns and reluctance and a mutual decision to change paths.

Or maybe I'm all wet? I don't know. I just didn't realize that all my efforts to do what HAD TO BE DONE (like I kinda sorta thought it was really important he be able to talk if possible) would just result in him concluding he was messed up and broken. And I don't have anything really witty to say to that. Like if he was burned all over, it would be obvious, because it's not intrinsic to YOU. But what do you say when the issue IS you, your actual self and it needs work?

Adding: It's not like it will stop here. We've had speech, OT, music, counseling, behaviorists. He'll need more counseling in the future, probably permanently. It's not like there's some end date on this. And how do you do all that and not imply someone is broken or messed up or defective or so radically different or whatever? I mean he is radically different, but frankly he's also more FUN than a lot of people. It's just like another facet, like some people do those things easily and he doesn't. But he does some things easily that others don't.

Edited May 15, 2019 by PeterPan

[PeterPan]

It shows you how delayed he is btw, that he's just noticing this stuff. He didn't realize he was younger than the kids in his swim classes for a long time. Like they were 4 and 5 and he was 7, 8...  

So if I said something about some things are easy for you that are hard for others and vice versa, is that crass? Is that like so the wrong answer? LOL 

I think what it really means is we may near the end of compelled therapy for anything he doesn't see the value in. That could be what it means. 

And I'm sounding down here and overall I'm not. It just made me sad. I got him a new, uber cute desk at IKEA today. It has some kind of bamboo top and little drawers and is just adorable. I've given up on working around the house and am working to get us back more into his office. Like it's ok to work around the house, but I want our office back on track. I haven't totally figured it out. I still need something for calming for him, something that doesn't take up a lot of space but gives deep pressure. He found this little half egg chair at IKEA but it's too small and wouldn't last long. But something like that maybe, lol.

I guess he is different. I guess in a way it's his own hurdle to deal with. Like I can try to help him, but he has to wrangle with that himself. Maybe we have some truims or good sayings? Do you have any? I have such a terrible sense of humor. Like it's the spectrum, so what? I don't know, maybe that's the real or bigger issue here is coming to terms with himself and a diagnosis and figuring out what that means and who he is? Maybe that's what he's trying to do? 

I don't know. I'm all for the posters with pictures and the way they laud up people with dyslexia who've done well. That really makes sense to me. But I can't really go oh look at this dude with autism and look at how great it is for him and how it spurred his awesomeness. Not hardly. To me it just is, like it's a so what, a nothing burger, not interesting, not noteworthy. But I guess it is noteworthy in the sense that everyone else notices, sigh. And it sorta affects your employability. But as far as affecting your value as a person, it's just variety, parts of the body, things that give us variety in the world. But it's different, yeah.

I don't know, that's going in circles there.

[8filltheheart]

No answers, Elizabeth, just understanding and sympathy.  Unfortunately, for our ds, it has just gotten worse over the years.  Our youngest ds is getting married next weekend.  This makes 2 younger siblings having moved forward with relationships/marriage/family and ds feels the loss of normalcy intensely.  He spirals downward every single time a younger sibling makes a step toward adulthood that he has not taken.  It wasn't too bad when our current college sophomore went to college, but when our current 11th grader starts college, I imagine it is going to be bad.  We used to always refer to our youngest three daughters as the "little girls." When one of the "little girls" starts moving toward adulthood goals that he has not achieved, it is going to be a self-esteem destroyer. 

We have been unable to get him to accept himself for who he is and not compare himself to others and celebrate his own accomplishments.  If I could figure out a way to make him celebrate him as who he is, I would be thrilled.  Instead, his self-awareness just undermines his self-confidence and esteem.

[PeterPan]

2 hours ago, 8FillTheHeart said:

We have been unable to get him to accept himself for who he is and not compare himself to others and celebrate his own accomplishments.  If I could figure out a way to make him celebrate him as who he is, I would be thrilled.  Instead, his self-awareness just undermines his self-confidence and esteem.

Thanks for sharing. Unfortunately, that makes a lot of sense how that could happen. And probably each person's dynamic is unique. Your ds is seeing his differences by comparing with his siblings, and my ds is by piecing together the therapies. I think my dd missed it because about the time all this occurred to her she was in this group (through a co-op) that had tons of kids with differences. It was just like it was normal to be different, lol. Maybe that's what I could work on, hmm.

[Kanin]

5 hours ago, PeterPan said:

It was just like it was normal to be different, lol. Maybe that's what I could work on, hmm.

This makes sense to me.... and since your DD is already off to college, maybe your DS will have an easier time because he won't have younger siblings moving past him.

Sorry he's having a hard time 😞 One of my students said the other day, "Am I with you because I'm not smart?" 💔

[Innisfree]

We deal with similar stuff. I wish I had good answers. 

You're right that it impacts the therapy you can do. 

Edited May 16, 2019 by Innisfree

[kbutton]

Would he be responsive to knowing that the therapy will stop if it's no longer helpful, but for now, you're seeing him bloom and grow in xyz ways? Can you explain that it's like fertilizer?

Some of the therapies he's getting are overdue because it took a long time to find the right therapists, labels, etc. Can you explain that you're making up for lost time, and that each thing you are doing makes work easier later? (This helps my son, though he's not looking forward to doing longer writing later like his friends have to do, lol! But he does understand that he needs the skills for his own goals.)

Does it help him realize this is to meet certain goals of making him the best version of himself that he can be? This one doesn't fly as easily for my son unless it makes him feel better directly (like OT did), but this is because the skills he's getting are 90% about jumping through a hoop for future goals.

I'm curious if this is coming up with his supplements too (why he has to take them when other people do not)--if it's not but it could later, how you handle this could feed into how you end up handling that. You definitely don't want him to fight taking supplements that keep him calm and workable! 

On a side note, I would seriously caution you to not make a contrast IRL to people you talk to about physical issues, like having been burned, as being different to a neurological difference. It's not going to go good places. I kind of understand why you are bringing it up here, but the feelings for those who have been forever changed physically are probably not running toward logically detaching their changed body from their inner selves. Not from what I've heard people who have had a trauma like that say. I am watching (from afar) someone go through that reckoning right now, and it's NOT pretty. 

Hugs. Obviously I have kiddos going through this too, but it's been a little easier here on the neurological front, and we mostly have an end goal in sight. We are very close to hitting a potentially ugly stage with the younger one about his genetic diagnosis. His awareness is growing, and his body image is in the forefront as he's about to hit a big growth spurt and be in the worst of puberty. And for him, the news only gets scarier--"Yes, you'll likely live to a ripe old age, but it won't be without significant discomfort, pain, and possibly disability. Also, you're likely to have to have your chest opened up for major surgery at least once to achieve old age. Looking different and having major activity restrictions is just the tip of the iceberg." It's known in the disease community that this leads to some really rough years of reckoning (and sometimes really poor choices).

Hang in there!

[PeterPan]

So a little update. I talked with the behaviorist, and she said ds (and 99% of her clients, haha) have no clue anything is an issue with them. They're fine in their world and whatever they do see they ignore. So she said the healthy view was:

-we all have stuff to work on

-it's just stuff to work on

-we work on it because it helps us accomplish our goals.

So it's not working on something because it offends other people or what other people think, as that's a really unhealthy way to view your lift. You work on it because you have goals and things you want to be able to do and access.

So I thought that was reasonable and well thought out. And she laughed because yeah that's so spectrum to be like I'm either ALL THE WAY PERFECT or TOTALLY MESSED UP, haha. How about something in the middle, like we all have some problems and things to work on, lol.

[ktgrok]

On 5/14/2019 at 11:36 PM, PeterPan said:

It shows you how delayed he is btw, that he's just noticing this stuff. He didn't realize he was younger than the kids in his swim classes for a long time. Like they were 4 and 5 and he was 7, 8...  

So if I said something about some things are easy for you that are hard for others and vice versa, is that crass? Is that like so the wrong answer? LOL 

I think what it really means is we may near the end of compelled therapy for anything he doesn't see the value in. That could be what it means. 

And I'm sounding down here and overall I'm not. It just made me sad. I got him a new, uber cute desk at IKEA today. It has some kind of bamboo top and little drawers and is just adorable. I've given up on working around the house and am working to get us back more into his office. Like it's ok to work around the house, but I want our office back on track. I haven't totally figured it out. I still need something for calming for him, something that doesn't take up a lot of space but gives deep pressure. He found this little half egg chair at IKEA but it's too small and wouldn't last long. But something like that maybe, lol.

I guess he is different. I guess in a way it's his own hurdle to deal with. Like I can try to help him, but he has to wrangle with that himself. Maybe we have some truims or good sayings? Do you have any? I have such a terrible sense of humor. Like it's the spectrum, so what? I don't know, maybe that's the real or bigger issue here is coming to terms with himself and a diagnosis and figuring out what that means and who he is? Maybe that's what he's trying to do? 

I don't know. I'm all for the posters with pictures and the way they laud up people with dyslexia who've done well. That really makes sense to me. But I can't really go oh look at this dude with autism and look at how great it is for him and how it spurred his awesomeness. Not hardly. To me it just is, like it's a so what, a nothing burger, not interesting, not noteworthy. But I guess it is noteworthy in the sense that everyone else notices, sigh. And it sorta affects your employability. But as far as affecting your value as a person, it's just variety, parts of the body, things that give us variety in the world. But it's different, yeah.

I don't know, that's going in circles there.

I have one on the spectrum, one  with dyslexia, and one with probably dysgraphia/adhd/PANDAs. We talk a LOT about how everyone has things that are hard for them, or easy for them. And we talk about how in some ways it is great that they are learning to work through hard things now, as a kid, rather than never learning to do that. And I talk a LOT about things that are hard for me, or for my husband, etc. examples of how everyone has things that are hard. So when one kid was having a speech eval I talked about how I went to speech therapy and their aunt did to. I point out things that are hard for me, like being patient, or handwriting or being on time or noticing details or being coordinated, etc. Daddy has trouble with different things, like letting perfect be the enemy of the good, anxiety, etc. . So they get this worldview that everyone has stuff they are not as good at that they have to work on. 

[PeterPan]

Hard and suck it up aren't usually strategies that go over well with ds. He's ASD2 and will shut down with that. He really has to have things on the cheerful, within reach, not hard side. I also really dislike it INTENSELY when therapists use the "you're broken and have something wrong with you so you should realize you need to work on this" line. I've heard SLPs do this in practices (because we've been in a lot o practices) and it's SO screwed up in the head. 

I think the behaviorist had something more naturalistic, just a realizing he can't do something that he might want to be able to do. In reality, very little of what he's needed to do has been HARD for him. He learned to read comparatively easily, despite being dyslexic. He has a severe apraxia diagnosis, but they've always kept therapy playful and within reach so that it didn't feel hard, only tedious. Math, same thing, always small steps that are gamelike, not hard. He's going to shut down if it's hard. 

Ruth Aspy had a point, and I'm just realizing maybe it applies, that the dc actually has to realize what the GOAL is. She was talking about socializing, and she was emphasizing that it wasn't enough just to throw kids together and say they got social. They need the opportunity, FEEDBACK, and to realize how close they got to the goal. Without the rest of the process, no progress. So I think GOAL talk is really healthy. That merges well with what the behaviorist is saying. (we could have this goal, how would it help you if you had this goal, would this be a goal you could realize you'd want) Hmm. It might even be interesting to do some goal inventories with him. I think sometimes he feels like he's being pulled along through activities and doesn't know why. That could be really interesting, because it could work for academics, social, independent living skills, everything.

[ktgrok]

I would never say "you are broken", I just point out that everyone is different, and we all have some things that come easily, and some things that are harder for us, and that it is different things for different people. 

I'd also say that being able to do things that are hard is probably a necessary skill in and of itself. That doesn't mean that the therapies and academics need to be hard, but that SOMETHING should be hard and then he works hard and gets success with it. Otherwise, eventually he will hit something hard and think hard = can't do it and won't even try, you know? In the beginning, I think maybe the best way to approach that is to do something with or in front of him that is hard for YOU...let him see you struggle, have some small failures that you regroup from, let him see you laugh at yourself as you mess up. Let him see you get frustrated and handle it. (and of course, since this is ASD we are dealing with, actually verbalize all those things out loud).

I have a LOT of ASD traits but don't think I'd be quite diagnosed (DS19's father also had ASD traits but different ones than mine, so he got a double dose of those genetics). I think the BEST thing for me growing up was seeing my Dad mess up and be okay with it. In fact, my sister and I have both agreed, despite having VASTLY different personalities, that that example of emotional resilience was probably the biggest factor in our upbringing. We have this innate sense of "we can figure it out, even if it takes several tries" and "if you mess up you just fix it, no big deal" that a lot of kids and  adults don't seem to have (she's a high school principal, and tries to pass on that attitude to her students). 

It can be simple things, like putting together Ikea furniture, speaking out loud about how confused you are, how lots of people are good at this but man, it sure is hard for you! Then realizing you put something on backwards and having to undo it all and start over. Saying out loud, "Ugh! That stinks. Oh well, I'll get it right this time. It's hard, but if I keep at it I'll figure it out". Or learning a new hobby, home repairs, etc. Let him see you get way out of your comfort zone and muddle through. Let him see you make mistakes, and recover from them, and verbalize the process. Let him see you struggle and succeed, even if success isn't perfect. Like, "man, this cake is a bit lopsided, but I did it! And I bet it tastes good anyway. My next one I'll do XYZ and it will be even better." 

Then, after he's gotten used to that, and you talk about it, try having him do something hard, or do it together. With the black and white thinking that goes with ASD it can be a real problem, as they tend to think that hard = bad at it= shouldn't even try. Which leads to real problems as they get older. So to be clear, I don't mean slam the kid with a bunch of hard stuff, but do make "doing hard things" a skill/goal to work towards. Oh, and point out OFTEN the hard stuff he has already done....you break it into manageable bites for him so it sounds like he doesn't realize it was hard...make a big deal about how it WAS hard, and the HUGE gains he made, and how it seemed easier because it was broken down into smaller bits, and that when he hits something new that seems hard you can do that again, break it down into easier bite sized bits. 

[Storygirl]

I love your post, Katie.

My 85 year old dad has a lot of spectrum traits. I have never asked if others in my family see it, because a diagnosis would be beside the point now. But Dad never messed up. I mean, he did, because we all do, but he never admitted it, talked about it, or showed weaknesses. And that, in itself, is a weakness. When Dad was a schoolboy, a music teacher told him he can't sing, and he never sang a note after that. Ever. If he can't do it well, he won't do it.

I, unfortunately, am also a perfectionist, and I beat myself up about things all of the time. It would have done me a world of good to have better coping skills modeled for me and directly taught to me.

 

Edited May 22, 2019 by Storygirl

[Rosie_0801]

We shrug and say "brains are weird." It depersonalises it a bit. Sometimes brains won't do what we want them to do. Sometimes our bodies won't do what we want them to do. Sometimes our emotions or hormones won't do what we want them to do. Life is kind of weird like that.

[PeterPan]

2 hours ago, Rosie_0801 said:

Sometimes brains won't do what we want them to do.

What changed your awareness on this or got you to that place? I don't *remember* for me. I could try putting it that way though, could work, you never know. 

[Rosie_0801]

8 hours ago, PeterPan said:

What changed your awareness on this or got you to that place? I don't *remember* for me. I could try putting it that way though, could work, you never know. 

I don't know. It sort of seems self evident? We did explore a few basic areas of the brain when dd was small- the hippocampus, the prefrontal cortex and the amygdala. That helped depersonalise things a bit. We had someone to blame! 😛 "Hey Amygdala! Can you calm your farm a bit and let Prefrontal Cortex do some thinking? No? Okay. We'll wait a bit. You good now? Alrighty." Dd's prefrontal cortex is not terribly robust, so she was always trying to remember things that she didn't know, so then it'd be "This is new, so your hippocampus doesn't know it. We need your prefrontal cortex to do some thinking and learning now." Dd always seemed to find it helpful to know who in there was supposed to be responsible, lol. Part of all this was Amygdala can be a bit touchy, so sometimes they need us to ask if they are having a real problem or if they have accidentally made one up. Nobody likes to be told they are overreacting, but it is a fact of life that Amygdala do this sometimes and we don't want them to feel bad if they don't have to.

That kind of thing.