S/O countercultural kids on GE board

[4KookieKids]

I've been turning this countercultural kids thread on the GE board over and over in my thoughts. I don't know what to make of it really, particularly with respect to my kiddo who is ASD2. I want him to be his own person, to be confident, and to know that he doesn't have to "fit in" and bow to peer pressure. But I'm also working hard to teach him what is socially appropriate behavior and the kind of behaviors that are more likely to result in other kids liking him. I know that keeping current on pop culture is different from social skills, and yet there does seem to be some gray here. I feel like I'm sending mixed messages of "Be yourself... but kids are gonna laugh at you if you keep tucking your pants into your socks..." and "You're not responsible for other people's emotions/reactions... but you need to adjust your behavior when you're annoying others/making them uncomfortable/etc."

 

I'm struggling to even put my confusion on this into words. Can anyone chime in? How do you teach kids to be their own person and be confident going across the grain at the same time as you're trying to teach them to go with the grain to make more friends? I certainly don't want to teach him that he has to be different if he wants people to like him, and yet... it seems that he does. How do I reconcile that?

[mellifera33]

I understand. I've struggled with this too. I'm having trouble articulating my thoughts atm, so I'll come back to this. 

 

Okay. So ds is in a social skills group. He is learning to categorize behaviors by the impact they have on others--does the behavior make others feel good about you, feel okay about you, think you're weird, think you're annoying, or is it just plain against the rules. Reasonable enough, especially when he's dealing with the general public. But it seems exhausting to me to analyze everything you do to determine its impact. And he doesn't. When he's with his buddies, he can act a little weird, and they're all okay with that. He is learning when he has to be especially careful--say, on a playground with kids he doesn't know well--and when he can relax a bit--when he's playing with his friends who know him and won't shun him for his little odd habits. It helps that he has several friends who are also on the spectrum, so they either don't notice or don't care about atypical mannerisms. 

 

Pop-culture wise, I think that now is a good time for kids who have geeky interests. Minecraft, Star Wars, Doctor Who--they're all acceptable interests for kids. Actually, my kiddos are more pop-culture attuned than I ever was. Somehow they learned about dabbing, and every time we listen to music in the car they're all dabbing like mad. I won't pretend to understand that one. :)

Edited February 25, 2018 by mellifera33

[OneStepAtATime]

:grouphug:

 

It is a balancing act.  DS and DD march to the beat of their own drummer a lot of the time.  What I have had to do is teach them explicitly what is the "norm", let them know when we are in a situation where "norm" behavior is needed, and then let them also decide whether they want to follow that path or not and help them figure out what that path would look like.  Sometimes it works well.  Other times it is a dismal disaster.  And a lot of in between. 

 

A small example or two:  DS has his own way of looking.  His style of clothing is not the norm in our area.  It is a blend of much older time periods coupled with modern.  Sometimes he looks very out of place compared to same age peers.  He is old enough now that he made this choice consciously because he LIKES his look.  It is irrelevant to him that others might think it odd.  He and I discussed that others might not understand but his choices were not offensive so I wanted him to know that he could choose his clothing.  He created his look and is happy with it.  I supported it.  He is happy with being his own person and has gained the respect of his closest friends in his choice to do his own thing.  When DS was younger he had a doll.  We had used the doll to help potty train him.  While he was toilet training he was also being the "parent" by also toilet training this doll.  It had worked brilliantly for this child. However, he took his role as parent very seriously and years after he was still "parenting" this doll.  He wanted to take the doll to school for show and tell.  I had to balance sharing what others might think regarding this doll with what he felt about this doll.  When he was 4 that was enough and frankly most kids didn't care.  When he was 7 kids cared more.  He got teased.  A lot.  It was painful.  He stopped sharing his doll with the world.  He still has it as a very young teen.  He still feels a kind of loyalty to this doll, a sense of responsibility even though he knows it isn't real and is not his actual child, but the doll remains hidden because he knows others don't understand.  I have not made him get rid of the doll or made him feel bad for his feelings.  I do wish I had better prepared him for the reactions of others.  

 

 

[nature girl]

OneStep, after hearing your son's story I think I've fallen in love. :)

 

I've wrestled with this as well with my daughter, so I'll be following along with this conversation. We're lucky that it hasn't been too much of an issue so far (2nd grade), but I'm sure it will be as she gets older and kids get more clique-y.

 

As an example, since she was very little, 2 or 3, she's made up various imaginary friends. And for the past 3 years that friend has been "Tweetie," a little bird she makes by fluttering her fingers, talking to it (it makes bird songs back), blaming it for little pranks, etc...I think she uses it too when she feels uncomfortable about situations or doesn't know what to say, it helps having that little friend at her side. So I wouldn't want to tell her to stop, but for a long while I was telling her it would be best not to talk about it with her classmates (I suggested she keep Tweetie in her pocket...) and she didn't mention it when she first started PS last year. But sometime since then, everyone in her class has come to know about Tweetie. She says they think he's cute, that they talk to Tweetie and acknowledge him as a real presence, and one of the girls in her class actually has started making her own bird with her fingers that she calls "Sweetie..."  :wub:

 

So we've been REALLY lucky so far, but I know that won't last forever. And that eventually a certain type of kid might use it as an opportunity to tease.

SaveSave

Edited February 25, 2018 by nature girl

[nature girl]

OneStep, if it makes you feel any better, my almost-15yo still has his teddy bear, and he will not/cannot sleep without it. It wasn't until around the age of 10 that he stopped toting it everywhere with him.

 

 

A NT adult friend of my SIL still sleeps with her stuffed bear from childhood!! (And she's married!)

[frogger]

I think this is hard to balance for some kids. Mine still tucks his pants into his socks. I had to laugh at the because I can relate.

 

Honestly, my child isn't fully autistic so maybe I don't belong on here. He has certain markers though just but not enough for a diagnosis.

 

I do think how much we impact others makes a difference. Running up to give someone a hug is different than tucking your pants into your socks afterall but there is a bunch of stuff in the middle of that though that does seem grayish.

 

I have a bunch of thoughts in my head but not really coherant ones at present. I'm sending my boy off to college and I picture him standing in the dorm lobby making laser noises and jerking his head this way and that. Then I hear about a police officer tackling a boy and putting him in handcuffs because he thought he was on drugs though the boy was doing nothing wrong just acting strange to the officer and I worry.

 

I really don't see how to get around analyzing what we do all the time. I do that as a NT woman or I may simply not have a diagnosis. Who knows. I know that having a decompression area, a place of safety alone where I don't have to analyze what people hear or see from me is super important.

[PeterPan]

I think there's a developmentally appropriate progression to what you emphasize. It's normal to start with a young (or developmentally young) child emphasizing love, appropriateness, being considerate of others. If you read the Bible, in I Cor 13:5 it has a verse that says love does not act unbecomingly. The word means inappropriately, sticking out. In other words, it's not LOVING to show up at a funeral in pajamas. That's not being picky or violating someone's ability to be confident and unique. It's just saying it's ok to teach our children to be loving, considerate, appropriate.

 

If we DON'T teach them to be loving and considerate, what have we raised? Children who think only of themselves and only consider themselves? That's the natural bent of autism. We can instruct on that without going overboard. 

 

My ds went to a school open house dressed as a pirate. It was maybe different, unique, but it wasn't inappropriate or sticking out in some unloving, offensive way. If you met the Queen with your socks arranged oddly around your pants, frankly that might be kinda rude. Same gig for the President. That would show that you didn't love them enough to be appropriate to the situation. And that's a talk you have, not by emphasizing the end point (because in reality you don't give a flip about the socks and the Queen and President would get over it too) by helping them THINK THROUGH what would be appropriate, where they might choose to be flexible or make loving choices. The PROCESS there, of thinking through and caring about others (really caring, as in showing care about someone, not being fearful about opinions) is valuable. It's nurturing good things with flexibility and giving them a thought process for knowing when they would choose to do something and when they might not. The socks were NOT the issue. The issue is are we nurturing his heart to care about people. 

 

I agree that the whole Social Thinking, we need to be worried about what the world thinks, is a real catch-22. It's easy to over-emphasize. You reign it back in by teaching them it means people will notice, people will have feelings, and then are you being kind and appropriate and loving in this situation.

 

Once you step the game up to ASD, the person is not just different but also having a decrease in self-awareness. They may not give a rip what people think. They may have some anxiety I suppose that makes them worry about what people think. I haven't seen stats on that. But that's a very NT thing to be worried about what people think and a pretty common thing the other direction not to give a rip. So my ds didn't care that no one else that was dressed like a pirate and he didn't care if no one else noticed.

 

In other words, handled carefully, any devil may care tendencies he already has can with time, grow into confidence. It's the seed that gets you there. I think you're right you could chop chop at the tender plant of self-confidence by errantly over-emphasizing ONE ASPECT of Social Thinking. MGW never meant for ST to be explained that way. It's supposed to be more of a gentle thing, a way of seeing consequences, not a hammer, not a tool for the NT population to bring down the gavel on what is appropriate and must be done and control people's minds.

 

In general, just use a light touch, kwim? If you go at it gently, lightly, and let him figure out for himself how to apply the concepts, it will probably be fine. You can't save people from hurt and you'd be keeping them from learning experiences if you could.

 

In reality, I find NT are way more worried about what other people think than the person with the disabilities. For instance, I have a relative with disabilities who isn't always socially expected in appearances. If I'M over it, others get over it. *I* set the tone. In whatever setting your dc is in, the adults in charge often set the tone. Some places are more accepting and treat all people equally, and some adults inadvertently play favorites. Know where you're putting your dc and whether they're creating a loving, accepting atmosphere.

 

The socks don't matter, but the growth in his thought process does.

[frogger]

I love your post PeterPan especially the focus on love and caring for others.

 

My one point of disagreement is how much of it is not caring versus not knowing what other people want or struggling to perform. It really depends on the child. I have worked with a number of children some in classrooms etc and some of it may seem like not caring but some of it is just hard for them. One told me he was stupid and wanted to kill himself because he was struggling to make himself do something. Yes, he IS getting help. Sometimes we don't do as we want to do as the Apostle Paul said.

 

I have offended so many people accidently over my lifetime because I don't understand (women especially). I'm not saying that they are wrong or it's their fault but I really just don't get it. You have to tell me things point blank. And many things that NT women do for me or to me makes me raise my eyebrow. It seems wasteful, pointless, or just confuses me.

 

So I think there does need to be analyzing and I would still encourage someone to try their best because caring about others is a worthy goal but I'd be careful about assigning the designation that someone just doesn't care.

 

But over all, I do love your post. That the world doesn't revolve around me.

Edited February 25, 2018 by frogger

[OneStepAtATime]

Sometimes it is absolutely not a lack of caring.  Humans are complex.

 

I remember being pregnant with DS and these women I knew kept insisting I MUST get a pedicure before the baby was born.  I had ZERO interest.  I accepted that for some reason this mattered to them but they could not accept that this did not matter to me.  That really threw me off and made me a bit testy.  I felt off kilter.  I wasn't trying to be rude but my "no, not interested" responses were falling on deaf ears no matter how I said it.  I finally was a lot more blunt, simply trying to communicate.  They got offended.  It was very frustrating.

 

With regard to DS and DD I find that often they are thinking through something logically then get thrown for a loop when the situation is not logical.  For instance, with DS and his doll, he really was so hurt and frustrated and confused that they were teasing him.  Why?  It made no logical sense in his mind.  He was practicing parenting skills.  He felt that to be a good parent it was necessary to practice those skills just like practicing swimming to get better at swimming and practicing reading to get better at reading and so on.  He had also realized that teaching those skills to someone else helped improve his own skills.  He had internalized that dynamic by potty training with this doll.  He was practicing his skills and trying to teach others, too.  He could not understand why others didn't grasp that this was important.

 

I have had to do a lot of explaining about why a situation may not be logical but is still something that may need to be acknowledged and dealt with in a way that makes sense to the person/group even if the situation makes no apparent logical sense.  On the flip side of that coin I have also had to discuss quite a bit how sometimes people are being illogical and need some help seeing a more logical option, but hopefully without being rude and offensive (which can be SO HARD to do).

[Crimson Wife]

We're not there yet, but I will be stricter with my younger daughter about adhering to female beauty conventions like shaving than I am with my older daughter. My older daughter is cognitively able to understand the consequences of choosing not to adhere to them. My younger daughter may not be and I may well take her to get laser hair removal on certain body parts (armpits, bikini line) just to avoid an ongoing issue with shaving.

[OneStepAtATime]

OneStep, if it makes you feel any better, my almost-15yo still has his teddy bear, and he will not/cannot sleep without it. It wasn't until around the age of 10 that he stopped toting it everywhere with him.

I had a stuffed lovey I carried around for years.  And my blankie.  I totally get it. 

 

FWIW, I carried my Tommy Tippy toothbrush with me to camp at 13.  ( https://www.ebay.com/itm/Tommee-Tippee-Musical-Toothbrush-1960s-Unopened-Sealed-New-Original-NOS-Toy/252480352141?_trkparms=aid%3D222007%26algo%3DSIM.MBE%26ao%3D2%26asc%3D44040%26meid%3Da7223d8e0edc4977b74f64c26beff7bc%26pid%3D100623%26rk%3D3%26rkt%3D3%26sd%3D401478556140%26itm%3D252480352141&_trksid=p2047675.c100623.m-1)I even took it on a hike and let the sounds play.  Yeah, I got weird looks but man I owned it.  I did not shy away from the fact that I had a  Tommy Tippy toothbrush as a 13 year old.  I still had a blankie, too.  Thankfully my 2 best friends were at camp with me, staying in the same tent.  They knew about both items and accepted that I needed these things.

 

So yeah, call me a baby if you will but I am me and I know why I need these things.  You got something to say, say it, then move on to other things please.  It was actually a good experience.  

[PeterPan]

Frogger, I think the difficulty there is that the same word is used multiple ways. One can say devil may care, and it doesn't mean the person isn't a caring individual. It's an obliviousness, a not realizing, being off in your own world, but I agree it does not mean the person on the spectrum is uncaring. I think that's the whole point, that they HAVE the capacity to care (show love) and grow and make choices for themselves, and the Social Thinking model can be errantly implemented in a very heavy-handed, top down way that doesn't encourage people to think and make choices for themselves. We've had professionals here on the board point that out before, that it's an inexperienced understanding of ST to do that. When you step up to behaviorists and people who have more training, they slow down and try to let the individual figure out the application (the what of the behavior) for themselves. They try to emphasize making choices, rather than rushing to the end goal. 

[Terabith]

My daughter took a pacifier to camp at age 11. I really didn’t expect it to go well and encouraged her to keep it in her pillow case, but she was all, “Nah. This is me. I just told everyone it helped me relax and sleep better and nobody cared.â€

 

After that I decided she probably will take it to college.

[PeterPan]

We're not there yet, but I will be stricter with my younger daughter about adhering to female beauty conventions like shaving than I am with my older daughter. My older daughter is cognitively able to understand the consequences of choosing not to adhere to them. My younger daughter may not be and I may well take her to get laser hair removal on certain body parts (armpits, bikini line) just to avoid an ongoing issue with shaving.

 

Laser hair removal is a painful, permanent (or semi-permanent) procedure, yes? Really shaving those private areas is THAT important? You wouldn't just maybe give her some choices like hey if this isn't comfortable for you, then here are a few options? They make swim shirts. They make swim suits that don't let those areas show. 

 

I don't know, I have a headache. I think you'll sort it out when you get there. I didn't shave my legs in college and it was at a school where that was NOT the norm. ;) I told 'em to take a flying leap. And that was legs and wearing skirts all the time.   :lol: I could get there if you were like ok she has a MOUSTACHE and it's holding her back socially and holding her back with getting a job. Like that's really, really hard to work around honestly, facial hair on a woman. That one I could really see where you might be a little more on the instructional/persuasive side. But bikini lines and armpits?? In your culture/area is that non-negotiable??

 

There are so many ways to live and make choices. A lot really doesn't matter. I don't know. You'll figure it out. Just take your time. And as a total aside, the more $$ razors with 3-4 blades make a big difference for sensory.

[PeterPan]

My daughter took a pacifier to camp at age 11. I really didn’t expect it to go well and encouraged her to keep it in her pillow case, but she was all, “Nah. This is me. I just told everyone it helped me relax and sleep better and nobody cared.â€

 

After that I decided she probably will take it to college.

 

She's got hutspah! I sucked my thumb through 5th grade, so about that age. I think my mother despaired I would ever stop, and then the orthodontist, wanting it stopped pronto, gave me a calendar and stickers. I wanted the chart to be perfect, so that was the end of it. 

 

Has she had OT? Tried a hot water bottle or other sensory? Definitely a score on her self-confidence, but maybe at some point she'll find other ways. Was she checked for retained reflexes?

 

And see there's your challenge, that by college, if she's got roommates, something like that will get around, mercy. And does it matter? I don't know, the better answer is could there be a way for it to be different? Like some combo of options and her choices. But definite score on the self-confidence. Lots of people have weird stuff. 

[frogger]

I remember a lady I went to college with grew out her beard. It was probably 3-4 inches in length. Scraggly compared to the average man but many men can't grow beards as thick as hers.

 

She said it was her and if people didn't like it, then that was their problem. I'm sure it had drawbacks though when interviewing for a job or whatever.

[Terabith]

We’ve seen good OTs at various points, and honestly, the strong drive to suck is the only issue. We tried replacement things, but none were satisfying and honestly, sucking a pacifier to relax is probably healthier than other sucking behaviors (ring pops, drinks). I can’t swear there are no retained reflexes, but she’s looked okay on all the things I did on YouTube and what the OT looked at. Nothing crazy obvious.

 

My college roommate sucked her thumb. And honestly, I am taking some classes at a local college now. College students are pretty relaxed. You do you. I honestly don’t think it will be a problem. She does sleepovers and just tells people, “This is who I am.†And she doesn’t really care all that much what they think, but they all seem cool. It’s no more remarkable than the fact that she can’t spell.

 

I look at the DSM, and she fits the ASD criteria, but every Eval has come up negative for it. The older she gets, I really think the anxiety is the only real issue. She’s got great theory of mind. You go over social rules with her, and she knows them. She just thinks that they are stupid. She can follow them if she wants to. The older she gets, the more she just looks introverted and like she doesn’t care all that much.

[PeterPan]

Well there you go. And I've seen these women on tv (and men) who have facial hair all over and they give up on depilliating and tell the world to deal with it. 

 

People continue to mature and change over time. It's not like the person is at 18 or 22 where they're going to be at 40 or 60. It's ok to mature and change. 

 

My ds is a mix of competencies or skills and weaknesses and delays. He's not all one or the other. It's kind of hard to accept, because you want them to get to enjoy the benefits of their gifts, when the reality is they're significantly affected by the deficits. 

 

It's part of why I'm updating our evals, because I really wanted to have that discussion of where is this going, what does this look like, where will we get headway and where should we just be like this is ok.

 

Really, you can raise the bar forever. In certain families and groups, not wearing make-up is not stepping up to the plate and being age-appropriate. Seriously. MGW hits the college thing, and there's a cultural aspect to that of people feeling how important it is, irrespective of whether it's going to lead to a good life for the dc. That's a big, counter cultural thing to walk up to with the 2E thing, how to say no to college for a gifted child and say yes to something else. That's being very counter-cultural.

 

I think it's going to be constant. You can fix their socks maybe, but then there will be another thing and another and another. I can see where that would get really awkward if my ds were *aware* that other people were doing xyz and it wasn't good for him at the time (or ever). That would be awkward really fast. I didn't see the other thread, but there's a difference between confidence and counter-cultural. I think the confidence to make good choices and know you're making good choices is worth a lot. Cultural varies and can change by crossing the street or who you hang with. Confidence though, that's the constant. 

Edited February 25, 2018 by PeterPan

[PeterPan]

We’ve seen good OTs at various points, and honestly, the strong drive to suck is the only issue. We tried replacement things, but none were satisfying and honestly, sucking a pacifier to relax is probably healthier than other sucking behaviors (ring pops, drinks). I can’t swear there are no retained reflexes, but she’s looked okay on all the things I did on YouTube and what the OT looked at. Nothing crazy obvious.

 

Did you do the one where you stroke the side of her cheek?

[Terabith]

Yup

[PeterPan]

Has she tried chewing gum for 20-30 minutes first? Just wondering, no clue if it would help or not. Gum is one of the sensory strategies we use with my ds.

[4KookieKids]

See and I struggle with confidence as well. Because my oldest child is very confident, but he is confident in areas where he is actually week, without realizing it. The confidence is not appropriate, really, but he doesn’t realize it.

 

In his case, he very much wants to be social. He wants friends, and he wants people to like him. I just really struggle to find the line between saying , “ if you want people to like you, do XYZ, and don’t do ABC†because I worry I’m actually teaching him that behaviors or values that I don’t actually want for him to have.

 

I’m so glad to have started this thread, and read all the great thoughts you all have. It helps me think through this. Honestly, this is something I have been thinking about with my typical children as well. I want my three girls to be liked and fit in, but I don’t want them growing up feeling like their friendships are contingent upon whether or not they choose to shave, for example. The situation with my ASD child is just more complicated.

 

I really love the idea of approaching social skills and things along these lines by loving others, and being kind and gracious. Choosing to wear make up or not, choosing to shave or not, these aren’t issues of loving other people. But making howling or meowing noises for an hour at a time, or even five minutes straight for that matter, is an issue of loving the people you are around because most people will get upset or annoyed at noisy behavior like that.

Edited February 25, 2018 by 4kookiekids

[PeterPan]

Just thinking as I'm reading what you're saying. Confidence vs. Anxiety? Confidence vs. bull-headedness?

[PeterPan]

Does he have a behaviorist or someone he sees to talk through social things with or receive instruction? Could you make that happen? It would both get some distance so *you* aren't always doing the heavy lifting and non-preferred and negative stuff and help him learn how to solve his own problems by asking for help. 

 

He's pretty young, right? I forget. I don't know, just throwing out ideas. It can help to hear things from multiple sources, like if he hears concepts from you AND a behaviorist AND in a social skills group AND...

[4KookieKids]

More like confidence versus clueless. I don’t think anxiety, and only sometimes bull headedness. But lots and lots of cluelessness, socially.

[PeterPan]

I want my three girls to be liked and fit in, but I don’t want them growing up feeling like their friendships are contingent upon whether or not they choose to shave, for example. 

 

I didn't realize this was important to some people. Are they likable? Someone can have a lot of funky quirks and traits and still be likable. And sometimes the thing that needs to improve to make someone easier to enjoy being with has nothing to do with the socks or whatever.

[4KookieKids]

We actually just managed last Wednesday to get him into a local social group that started up two weeks ago. He starts next Monday with a group of other nine-year-old boys Who are high functioning and highly intelligent and on the spectrum, which is perfect for him I hope. We are really looking forward to it, and feel like it was a huge godsend to us and answer to prayer ( just happened to work out that this was the only opening left, the group fits him perfectly, and without even knowing it was available, we qualified for a grant covering the entire cost of the therapy ).

[PeterPan]

More like confidence versus clueless. I don’t think anxiety, and only sometimes bull headedness. But lots and lots of cluelessness, socially.

 

Maybe keep thinking on all those words, because they're very different things. Even cluelessness is a combo of things (self-awareness, peer monitoring, attention, etc.). You could even run down a rabbit trail here and suggest that he's demonstrating his non-verbal deficits and that working on non-verbals would improve some of the things you're worried about. RDI would say that.

[4KookieKids]

I didn't realize this was important to some people. Are they likable? Someone can have a lot of funky quirks and traits and still be likable. And sometimes the thing that needs to improve to make someone easier to enjoy being with has nothing to do with the socks or whatever.

I don’t know honestly how important this sort of thing really is. I got ridiculed a lot for things that seem to me very trivial as a child. They are very young right now, so I’m really just trying to think about the future.

[PeterPan]

We actually just managed last Wednesday to get him into a local social group that started up two weeks ago. He starts next Monday with a group of other nine-year-old boys Who are high functioning and highly intelligent and on the spectrum, which is perfect for him I hope. We are really looking forward to it, and feel like it was a huge godsend to us and answer to prayer ( just happened to work out that this was the only opening left, the group fits him perfectly, and without even knowing it was available, we qualified for a grant covering the entire cost of the therapy ).

 

That sounds really good! Competency and experience will build his confidence. And the instruction he receives will have a direct, obvious application. Sometimes it can seem really esoteric (will they like me), but this will be pretty practical and immediate (how you're treating the person, how it's working out, etc.). 

 

My ds has been doing a group like that this term, and it has been interesting. He put everyone there on the "weird" list, but I'm not really sure he puts HIMSELF there. It's interesting to me that he sees the behaviors in others and doesn't realize them in himself. It will be interesting to see what your ds thinks of it.

 

As a total aside, my ds was stressed the first few weeks as we ramped things up. He calmed down, but it took a while to get used to. 

[PeterPan]

I don’t know honestly how important this sort of thing really is. I got ridiculed a lot for things that seem to me very trivial as a child. They are very young right now, so I’m really just trying to think about the future.

 

I think there's a lot more awareness now about disabilities and the inappropriateness of bullying. Bullying still happens, but the culture is so much more aware that it's ok to stand up for yourself or your friends and that teachers and adults in charge need to be proactive or responsive. 

[PeterPan]

I'll go back to this likability thing. People like my ds. Unless he has had behaviors with them, most people like my ds. He has a sense of humor, is polite or at least prompted to be polite (I've WORKED on it), picks up after himself, and will let people engage with him. Those things make for a mix that, if someone is inclined to come into his world, can be kind of fun. I'm not saying he shouldn't work more on reciprocity, being interested in other people's interests, blah blah. I'm just pointing out that having a few things in place, depending on the child, might give them the enjoyability/likability part. 

 

But bullying, yeah that's harder. If you're asking if you can protect them from bullies, sorry. You can fix his socks all you want, and people like that will find something ELSE to bully him about. I'm very careful with my ds' clothes. His bent is toward camo, but I don't let him wear it to town. I've always bought him Carters, straight down the line, so he looks "right". I take him to a professional hairdresser and she showed him how to use a special spray on his hair and use a brush. I buy him proper shoes. Like there's really nothing that screams out as "Yes, make me an object of bullying." He STILL got bullied at the Y by some jerk. Because bullies do it just to do it.

 

You can fix his socks, and he's still going to be part of a vulnerable population that can't express everything that's going on and can't self-advocate as well as other kids. We had a thread on this were someone linked a series of dvds for personal safety. Kids with autism are more vulnerable, just in general. My ds has a ton of language overall, so you don't think oh he isn't telling me what he's feeling. He got bullied and he couldn't put it into words. It continued and he just kept having behaviors, without really being able to tell us what was going on.

 

I don't know, it's semantics maybe. Lots of words there and little meanings. But all of them matter, because we can address them. Self-advocacy and safety are big deals.

[PeterPan]

I really love the idea of approaching social skills and things along these lines by loving others, and being kind and gracious. Choosing to wear make up or not, choosing to shave or not, these aren’t issues of loving other people. But making howling or meowing noises for an hour at a time, or even five minutes straight for that matter, is an issue of loving the people you are around because most people will get upset or annoyed at noisy behavior like that.

 

You have a behaviorist yet? Honestly, the social skills groups we're doing now are all run by SLPs, and SLPs are not competent to handle the level of instruction ASD2 actually needs. They THINK they are, but they aren't. ASD2 needs more time, more personal connection, more relationship. Also needs more support even in the group. Maybe your group will go awesomely. I'm just throwing that out, doing the same thing you are, that there are differences in level of support in the process. The SLPs in the social skills groups are often doing the same material a behaviorist will do, but they're doing it in a larger group, at a faster pace, with less time to slow down and support in case the child is stressed or needs more time to process. It results at them talking AT the dc instead of having a personal, counseling-style conversation WITH the dc. And I watch the ADHD and undiagnosed kids and lower support level (ASD1, kids who mainstream) in the group and it's like yeah, they can handle that. And the same setting, with my ds, is stressful. 

 

Anyways, you need to be talking these things through with a professional, and the SLP running a social skills group ain't it. Their knowledge is so cursory it's like gumball machine level. I swear, these OTs and SLPs running it don't even REALLY get Zones. Like seriously. They THINK they do, but they don't. I live it. I sniff it. I have to be so keenly aware. And sometimes I'll find an OT who is super aware, super skillful, noticing heart rate, everything, boom. But yeah, a lot of what's being done is superficial right now. Be very, very careful.

 

Anyways, yeah, you want someone who does only autism, all day, a behaviorist, and you want to run this stuff by them. Because you just took my one really fine concept (that we can make good choices in love) and applied it to STIMMING, which is a really complex, physically mediated issue. Huge issue. Complex issue. Challenging issue. And you just said it's so challenging right now that he's stimming or engaged in a repetitive behavior for an hour and that it's pissing you off so much because it's like well he must not love us or want to be loving or he would STOP that stinking behavior. (you didn't say that, but it could be to that degree, so roll with me)

 

And when it's at that point, it's time to get a behaviorist and have a professional sorting it out and helping you, kwim? 

 

My ds does it, so I get it. My ds was doing stuff like that while my dd was home, so I get it. Just make sure you're listening to the right paygrade when you're solving problems, kwim? 

Edited February 26, 2018 by PeterPan

[PeterPan]

This might be OT

 

 

I sleep with a GIANT Care Bear.  (Cheer Bear, if anyone cares).

 

DH bought it for me. 

 

Hahaha, I know, culture picks what's ok! Think about all the body pillows sold these days... 

 

I got my kids (and myself!) hot water bottles for Christmas. Talk about sleeper presents that turn out to be great! They're awesome sensory. They have weight and are warm. I put it on my chest or on my legs and it calms me right down, boom. It's crazy powerful and it's just an old-fashioned water bottle with a fleece cover. :D

[PeterPan]

We've tried pulling the "you need to love your sister enough to make a better choice" card on ds, and reality was that if he was stimming that intensely he wasn't going to be able to solve the problems and just stop. He needed a lot of support to move on, and sometimes there were other loving choices he could make. I've tried, over the last year or two, to point out to him his repetitive behaviors. Like I'll just say to him in passing "Hey, that's a repetitive behavior. It doesn't bug me, but it might bug some people sometimes and I want you to know so that you can recognize it and make a choice if you need to." 

 

I did that enough that he had a ground work that during a more intense thing (an hour of being an airplane in the house, buzzing and flying the WHOLE TIME, noises and all), I could say hey, that's a repetitive behavior, it's bothering people, and I need you to make a choice that helps it not bug people. And he at least knew what a repetitive behavior was and that someone was allowed to point it out to him. It wasn't ALL new. 

 

And sometimes we say hey, you're stimming and doing xyz repetitively. We're going to do that 5 more minutes, and then we're going to transition to something else. And I UP MY SUPPORT to help him get there and do whatever it takes. I don't let it turn into he's bad if he can't get there by himself, kwim? If my ds is at that level, he's going to need help to get there.

 

Sometimes we go hey, that repetitive behavior is fine, but can you take it to your room so it's quiet out here for so and so. That's the love concept, but it's not saying he has to STOP it (which really might not be where he's at at that moment). The decision he CAN make to show love is to let himself be moved/redirected somewhere else. But to say you have STOP, that might not be within reach, kwim? The loving choice is the choice he can make, and he might need some support for some of the harder things. The demand needs to be within reach, kwim? 

[PeterPan]

I used to have one of those rice heat pads that I would ALSO sleep with in the winter.  Microwave them and they are warm, and they do carry their own weight.  I had to pitch it because it was getting old and was not smelling warm and fuzzy anymore.  I want another though.

 

Ooo, super smart!!! I haven't had a microwave in years, but yeah that would be basically equivalent.  :thumbup:

[Terabith]

Has she tried chewing gum for 20-30 minutes first? Just wondering, no clue if it would help or not. Gum is one of the sensory strategies we use with my ds.

 

That was one of the strategies suggested, and I've tried repeatedly to get her to use it, but she hates pretty much all flavors of gum.  And she seems to be drawn to sucking, not chewing, so....  She's peculiar, and some kids call her weird, but there's a pretty sizeable group of kids that like and accept her.  I think she's just what we in the South would call eccentric, and really, that's okay.  She's very creative and imaginative, and she's picky about who she likes.  If she doesn't like a person, she won't engage with them, especially if they're a peer.  She can muddle through with adults who she doesn't like, although her disdain is quite evident, but peers she dislikes she, I'm not sure how to describe it.  Devastatingly ignores with utterly cold politeness?  But the kids who like her, really like her.  And there's reasons when she doesn't like someone.  Anxiety definitely is a big factor in her life, but she's not really afraid of anything in particular.  And it's not really social anxiety, either, though she's not a big fan of crowds, and she is definitely introverted.  But while she has anxiety, she also has had this precocious self-possession since she was a toddler.  She knows who she is, what she likes, and she will not bend for anyone or anything.  She is completely unbribeable.  You can't persuade her to do something she does not want to do for the sake of getting something she wants.  You have to persuade her that it's a worthy goal in its own right.  All of those things, especially coupled with the vocabulary of a graduate student and massive gaps from learning disabilities made her a very WEIRD four year old, but seeing the seeds of adulthood in her now, it looks more like integrity and self-possession than weirdness, and talking like an adult at 12 is much less weird than talking like an adult at four.  I think she's going to be a very cool adult.  Just probably one who uses a pacifier.  But, you know, my mom smokes.  I eat too much.  I think we all have that same oral seeking behavior (though gum does help me), and a pacifier is much healthier than those things.  What looked like preservative interests as a preschooler looks more like passion at 12, and she is able to know when the right time and wrong times are to talk about her interests now.  Just finding a community of other people who shared her obsessions was huge. 

[4KookieKids]

That sounds really good! Competency and experience will build his confidence. And the instruction he receives will have a direct, obvious application. Sometimes it can seem really esoteric (will they like me), but this will be pretty practical and immediate (how you're treating the person, how it's working out, etc.). 

 

My ds has been doing a group like that this term, and it has been interesting. He put everyone there on the "weird" list, but I'm not really sure he puts HIMSELF there. It's interesting to me that he sees the behaviors in others and doesn't realize them in himself. It will be interesting to see what your ds thinks of it.

 

As a total aside, my ds was stressed the first few weeks as we ramped things up. He calmed down, but it took a while to get used to.

 

Good to know ahead of time! He's looking forward to it, he said, even though we discussed it being work.

 

 

You have a behaviorist yet? Honestly, the social skills groups we're doing now are all run by SLPs, and SLPs are not competent to handle the level of instruction ASD2 actually needs. They THINK they are, but they aren't. ASD2 needs more time, more personal connection, more relationship. Also needs more support even in the group. Maybe your group will go awesomely. I'm just throwing that out, doing the same thing you are, that there are differences in level of support in the process. The SLPs in the social skills groups are often doing the same material a behaviorist will do, but they're doing it in a larger group, at a faster pace, with less time to slow down and support in case the child is stressed or needs more time to process. It results at them talking AT the dc instead of having a personal, counseling-style conversation WITH the dc. And I watch the ADHD and undiagnosed kids and lower support level (ASD1, kids who mainstream) in the group and it's like yeah, they can handle that. And the same setting, with my ds, is stressful. 

 

Anyways, you need to be talking these things through with a professional, and the SLP running a social skills group ain't it. Their knowledge is so cursory it's like gumball machine level. I swear, these OTs and SLPs running it don't even REALLY get Zones. Like seriously. They THINK they do, but they don't. I live it. I sniff it. I have to be so keenly aware. And sometimes I'll find an OT who is super aware, super skillful, noticing heart rate, everything, boom. But yeah, a lot of what's being done is superficial right now. Be very, very careful.

 

Anyways, yeah, you want someone who does only autism, all day, a behaviorist, and you want to run this stuff by them. Because you just took my one really fine concept (that we can make good choices in love) and applied it to STIMMING, which is a really complex, physically mediated issue. Huge issue. Complex issue. Challenging issue. And you just said it's so challenging right now that he's stimming or engaged in a repetitive behavior for an hour and that it's pissing you off so much because it's like well he must not love us or want to be loving or he would STOP that stinking behavior. (you didn't say that, but it could be to that degree, so roll with me)

 

And when it's at that point, it's time to get a behaviorist and have a professional sorting it out and helping you, kwim? 

 

My ds does it, so I get it. My ds was doing stuff like that while my dd was home, so I get it. Just make sure you're listening to the right paygrade when you're solving problems, kwim?

 

 No, we don't. There is a distinct dearth of them in my town, and they all have long waiting lists to get in. From what little I've been told, I believe there was an issue with my state not covering a lot of ASD related stuff on insurance until recently, and most of the providers got out of dodge a number of years back, and are only now beginning to trickle back in.

 

The social group he's joining is run by someone with a bachelor's in neuroscience and is a certified therapeutic recreation specialist, and does work with a lot of autistic kids, but not exclusively. 

 

To be clear, we have never felt or thought that his stimming (new word for me! :) man, see how little I know? ) is in any way related to his relationship with us and/or that he doesn't love us. Only on rare occasions do we ask him to stop; most of the time, if I'm getting annoyed after a few minutes, he's given the choice to either quit or go into a different room to do it. What I was trying to say earlier was just that right now, when he asks why he should stop/go somewhere else, the only real answer I've had is that it's annoying. And, I'll be honest, that doesn't seem like a great answer to me. Everybody has quirks that others might find annoying. So I had just thought that this idea of somehow discussing how making a choice to not bug people is really a way of showing love to those people might be something worth thinking about. On the few occasions when we have asked him to stop altogether, he was relatively competent (only took a few minutes to settle down). Honestly, it took me years even to be able to ask him to go somewhere else, because there was something in me that felt like it was selfish to ask that. He wasn't hurting anyone, and was it really fair of me to try to redirect/relocate him just because I was "annoyed" with it? It just didn't seem fair to me, so I dealt with it and just left the room myself when I'd had enough.... lol.  Looking back, I probably should've started talking about it much earlier, but there were just a lot of things that crept up on us slowly and weren't on our radar until they became "big" issues, and this was one of them. 

 

We've tried pulling the "you need to love your sister enough to make a better choice" card on ds, and reality was that if he was stimming that intensely he wasn't going to be able to solve the problems and just stop. He needed a lot of support to move on, and sometimes there were other loving choices he could make. I've tried, over the last year or two, to point out to him his repetitive behaviors. Like I'll just say to him in passing "Hey, that's a repetitive behavior. It doesn't bug me, but it might bug some people sometimes and I want you to know so that you can recognize it and make a choice if you need to." 

 

I did that enough that he had a ground work that during a more intense thing (an hour of being an airplane in the house, buzzing and flying the WHOLE TIME, noises and all), I could say hey, that's a repetitive behavior, it's bothering people, and I need you to make a choice that helps it not bug people. And he at least knew what a repetitive behavior was and that someone was allowed to point it out to him. It wasn't ALL new. 

 

And sometimes we say hey, you're stimming and doing xyz repetitively. We're going to do that 5 more minutes, and then we're going to transition to something else. And I UP MY SUPPORT to help him get there and do whatever it takes. I don't let it turn into he's bad if he can't get there by himself, kwim? If my ds is at that level, he's going to need help to get there.

 

Sometimes we go hey, that repetitive behavior is fine, but can you take it to your room so it's quiet out here for so and so. That's the love concept, but it's not saying he has to STOP it (which really might not be where he's at at that moment). The decision he CAN make to show love is to let himself be moved/redirected somewhere else. But to say you have STOP, that might not be within reach, kwim? The loving choice is the choice he can make, and he might need some support for some of the harder things. The demand needs to be within reach, kwim?

 

I like the idea of talking about repetitive behaviors in general. I failed to make that generalization, and so we just had a running list of things that annoy *most* people *most* of the time... lol. I know it's painfully clear that I don't have enough information about any of this to be doing a great job! lol. As I'd mentioned in another thread, we only had him evaluated about 15 months ago, and the advice that we were working on up until this month was the neuropsych's advice to treat him "normally" since he could use his smarts to compensate for his autism. We know now what bad advice that was, but it took 15 months of a slow spiral into somewhat chaos for us to realize how bad the advice was. Now we're just trying to make up for lost ground. We're on waiting lists for the only places around that do ABA, we're on waiting lists for the psych's in town who work more with autistic kids, we have calls out to an OT who does in-home terapy, and we're starting this social group. The lady who runs the social group shares an office and coordinates care with a group of psychologists who see a relatively large number of autistic kids, and although they are "full" and not taking new patients who "cold call", she's trying to see if she could get my kid in anyway based on the fact that she'll be working with him.

 

[PeterPan]

Sounds like you've got a lot of good stuff in the works!  :thumbup1:

 

Your therapy group is interesting, and I like that point that there could be people besides SLPs running them. Really good point. Makes me think if I dug harder I might find some other options for groups in our area that aren't being run by SLPs...

[mellifera33]

Sounds like you've got a lot of good stuff in the works!  :thumbup1:

 

Your therapy group is interesting, and I like that point that there could be people besides SLPs running them. Really good point. Makes me think if I dug harder I might find some other options for groups in our area that aren't being run by SLPs...

 

Our social skills group is run by a whole group of people--I'm not sure of the titles of all of them, but there is a psychologist, several OTs, and maybe even a PT. It's a diverse group of kids, and a diverse group of leaders. It's at a local hospital-based clinic that provides lots of different therapies. It's going pretty well for my ds. 

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[Targhee]

I love your post PeterPan especially the focus on love and caring for others.

 

My one point of disagreement is how much of it is not caring versus not knowing what other people want or struggling to perform. It really depends on the child. I have worked with a number of children some in classrooms etc and some of it may seem like not caring but some of it is just hard for them. One told me he was stupid and wanted to kill himself because he was struggling to make himself do something. Yes, he IS getting help. Sometimes we don't do as we want to do as the Apostle Paul said.

 

I have offended so many people accidently over my lifetime because I don't understand (women especially). I'm not saying that they are wrong or it's their fault but I really just don't get it. You have to tell me things point blank. And many things that NT women do for me or to me makes me raise my eyebrow. It seems wasteful, pointless, or just confuses me.

 

So I think there does need to be analyzing and I would still encourage someone to try their best because caring about others is a worthy goal but I'd be careful about assigning the designation that someone just doesn't care.

 

But over all, I do love your post. That the world doesn't revolve around me.

I also like what Peter Pan says about love! And I especially like this reply though, because what they do or fail to do isn't always about lack of love. My ADHD spouse does (and fails to do) many things that I would innately do out of love - call to say I'll be late, buy a birthday present, not leave my socks all over the house - but that isn't because of lack of love (and I have to tell myself that repeatedly). Even after I have talked to him and my kids about things that are appropriate/inappropriate (e.g. being late is rude so we need to get ourselves ready to go now) it is so hard for them.

 

To the part in bold - I'm NT and a lot of things women do come across this way too! I'm pretty practical and a minimalist so token gifts actually bother me (wasteful junk), and ritual/routine points of conversation become shallow and irritating. We all value different things I suppose.

Edited February 27, 2018 by Targhee