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Therapy/counseling for teen with high functioning autism


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3 minutes ago, Storygirl said:

In other related news, I got an email late yesterday from my cousin's wife that gives us another idea for where we could go for the counseling piece. She is an educational psych, and she gave me some information about the place where she works, and I think it sounds like a good place to check out. They have psychiatrists there to figure out medication, but also do therapy with people who have autism. It's possible that we could get two kinds of help from that one place. She gave me the phone number for the intake people, so I'm going to call to see what's what after the weekend.

This sounds like a good lead! Remember too to try a local support group, FB group to get word on the street. The local FB group I'm on for the big city regularly discusses these types of providers and there are a number of excellent ones that do what you're describing, yes. People seem very happy with that coordinated care, yes.

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This is definitely hard stuff to deal with!  Very, very hard.  The learning curve is really high, and then, things change!  I think I'm in a pretty calm period because I have a 10-year-old and I think we will be pretty stable/consistent (just keeping going the way he is, no big changes or decisions) until he gets into high school.

  

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2 hours ago, Storygirl said:

I'm a procrastinating perfectionist, so if I can't see a way to do something well and right, I balk and have a hard time getting started. I think there are things that I could do to make this county worker situation be helpful for us. But also, I think that if I don't think that it will be the most helpful thing, it would be okay for me to put it on hold for right now and focus on something else first. DH and I can discuss it, and now that I can explain better what I'm struggling with, I think we can feel better about being able to make a good decision.

In other related news, I got an email late yesterday from my cousin's wife that gives us another idea for where we could go for the counseling piece. She is an educational psych, and she gave me some information about the place where she works, and I think it sounds like a good place to check out. They have psychiatrists there to figure out medication, but also do therapy with people who have autism. It's possible that we could get two kinds of help from that one place. She gave me the phone number for the intake people, so I'm going to call to see what's what after the weekend.

Regarding the bolded, me too. Truly. I need to see the big picture, and I feel like if something doesn't go well after all that thought and effort, there isn't going to be an obvious way to do take number 2. Then the first try seems so insurmountable. 

15 hours ago, Storygirl said:

So here are the goals assigned to the home worker, from his county plan.1) Create a checklist or weekly schedule for tasks at home/school. Create a workable document that DS can transfer/use for any task given to him.

I might not have a lot of time to get granular on everything, but I have some thoughts on this...it's a great goal.

The checklist is going to have to have some meaning to him or be something that he will eventually see as meaningful, and that meaning might need to be pointed out and reinforced. I think that this is really going to be a million and one series of checklistS. The checklist might start not so much as steps but really be something more like--"I am going to the store, and I want to be sure you have the snacks you enjoy and enough of them. What do you think of this list?" And then start transferring ownership of this to him in pieces. I wouldn't make him remember to take stock or work with you every grocery trip on his own, but you could get there at some point. I would start out as passively as possible and as personal to him getting something he wants as possible. Then build on that.

You might need it to be mono-tasks that are hard and then string them together, such as the knife skills suggestions that Lecka pointed out.

(Aside on ABA) An ABA person can probably find good reinforcement as well as be able to ABC what's working and not and where you and your son might be talking past each other or at cross purposes to one another. Perhaps someone else can too--I just haven't had that experience. 

So, is there something that would be meaningful to him that would be a list? Does your family do group list making, or are the lists always top down? I know he's not that cognitively flexible, but is there ever a time when a list that you didn't really want to take the time to make saved your bacon, and if so, would that mean something to him? Could the teacher do some meal prep/planning and somehow pass it off that she's really scattered in general (or distracted by an unfamiliar store layout, or something like that), and SHE needs the list--why doesn't your son help her out? Could she play it off as a game.

I really think that for a lot of kids, SOME, not all resistance has a root cause or perception. Not always--obviously ODD makes a big difference too. But, maybe there is something down in there inside your son's motivations that could be appealed to. I hate to say, "Stroke his ego," but if you struggle to channel his strengths, or he doesn't use them for good, some form of making him feel needed or flattered could be a way to bridge the skills he has to a source of motivation. 

15 hours ago, Lecka said:

This is just an idea — would she like a book from Social Thinking that she goes through with him? It would be talking, but it would have some structure to it?  If something like that would appeal to her?  

And you can link it to a county goal of money handling if they go to a coffee shop and he orders and pays, and they work on it there?  

Or maybe she could go through an educational book about self-care and hygiene?  It wouldn’t have to be personal to him.  

Just thoughts — I have seen books like this I think (and for this purpose I think).  

I am going to post this link again because it might be a good one for conversations: https://www.amazon.com/dp/0470259361/?coliid=I3VIME5RLL8IOF&colid=3494X931L2H07&psc=1&ref_=lv_ov_lig_dp_it

If you look in the frequently bought together section, there are other books by the same author for LIFE SKILLS, not just social ones. They claim to be ready to use lessons. Our ABA liked them as a starting point with my son--it was sometimes too low of a level for him (he would not qualify for board of DD help), but she used it as a jumping off point for discussion, and my son liked the lessons a lot. 

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What I do think is that he will benefit from practicing communication skills with a non-family adult person. So anything he does with the worker can be beneficial for that. But that is just too wide open; our teacher/worker needs to have some defined things to do with him.

And I seem to be the only one to come up with those defined things. So the whole thing, right now, is just feeling like extra work to me, when it is meant to be extra help. That makes me grumpy and also makes me feel ..... inept, because I don't know what I'm doing, and somehow I have to figure it out.

I thought the county case manager would be helping me figure things out, but she only questions me about my plans.

 

If we decide not to use the worker for now, I can ask to use the funds for something else. There is a wide variety of things I can use it on (according to our school special ed coordinator), but it is kept mysterious -- no one at the county gives us a list of options to choose from, for example. I have to drag things out of them by asking lots of questions.

Sorry, this is all kind of a vent. But it reveals why I'm finding my thinking about all of these things to be in disarray. I'm finding it hard to make things happen. And to figure out what I should be making happen.

I think on Monday I will call the counseling social worker on the list. Maybe maybe maybe she has openings and can help us sort out where to start and how to dig through the weeds to make a plan.

So, the first chunk above--see the book link. I really think it would work for this. 

You are not inept. People who navigate this system ALL THE TIME find this to be the case as well. It's like you need a secret password that changes every day to talk to the county people.

I think talking to the social worker is a positive step.

12 hours ago, Storygirl said:

I'm actually not convinced that a behaviorist (or worker/whoever) would see the problem behaviors at home. He is a different person when others are around, than he is with us alone. Always has been.

Teacher Ms. B knows the arguing side of his personality already. She's one of the few adults that he has shown that side of himself to, in the past. She gets both his quiet, rule following persona, and his more spunky side, though a mild version of it.

It can't hide completely forever and ever, but even if it does, it doesn't necessarily mean that the worker might not be able to build something will transfer to home or be something that you can build on at home. I wouldn't see this as a totally lost cause--I have been surprised at what the relationships with workers do for my kids even when the goal I have isn't being met. It's weird until you see it.

11 hours ago, Storygirl said:

Oh, and he does not constantly behave in an emotionally charged way at home. It is episodic. There are certain times of day when the angry outbursts are almost guaranteed to happen. But there are also long stretches of the day when he is calm and pleasant. I could go into what triggers things, but it will be more helpful for us to work that out with a counselor.

So I think there are two good goals, with the money and the shopping/cooking. But those areas are layered with levels of needed instruction -- he can't use a knife well, for example -- so a worker would still need to have me explain the needs in detail and plan things out. I'm not against that. I am just saying that it doesn't translate into less time or effort on my part than working on those goals myself.

The benefit of working with someone other than me is real. And is probably makes it worth it to train someone else, rather than do it myself, even if it saves me no time.

I would not ask a worker to help him prepare a meal for our six person family, so what we are talking about is for them to prepare a snack or perhaps a meal for the worker and DS to share. So it wouldn't be replacing the need for me to cook dinner.

The episodic stuff--maybe someone can help you with the ABC's of that stuff even if they don't fully do ABA. If you already know there are triggers, that means goals can be made, problems can be solved, etc. Seriously. It's huge that you can identify some ABCs; you just need to get to the other parts of the function, how to deal with it, etc.

Yes, it will be helpful even if it's not time-saving. It's so hard to realize that--this is good.

10 hours ago, Storygirl said:

I do think I am feeling a disconnect with this. Because the county case manager and the other county people we met with are kind of like, "he can just have a buddy to go running with, or go shopping with." Like just being a friendly companion is enough. But then there is this serious seeming document, with the goals. And the goals are not about running. And then the goals seem kind of on the simple side. Like, "hey, let's put on deodorant every day and learn how to make a sandwich and count pennies."

But then the disconnect is that the worker is expected to make progress on the goals, and I have to give the case worker an explanation of how the worker is going to do that. So I feel pressure from that.

Because these things sound easy, but they are so, so hard to breakthrough and make progress on. And it's not going to happen by someone being his buddy and going running with him.

 

And also, honestly, it seems like this county worker system is a little light on the expectations for an organization that is dealing with people who have disabilities. I mean, the reason that these things are hard is that they are affected by the disability. But we can address it with a running buddy?

Honestly, I expected more. Our county is known, actually, for having good funding for disability services. I'd like to feel that what we get is more robust. I think there are things available that might dig in deeper and help more, but I don't know what to ask for. I do know some things that the special ed person at our school told me, but I know I don't have the whole picture, because she just listed a few examples of what the county can do. The county case managers didn't tell me anything from that list and just presented the home care worker as what they thought we needed.

But maybe there is a service we could use, that would help us even more? To be blunt, I don't see how a paid worker is going to accomplish goals that we have been working on for years with him, when the worker is not required to have any expertise, other than that I want to hire them? No qualifications, otherwise, other than passing the background check.

This does happen. This is normal here, honestly. Maybe not elsewhere, but it is here, even the double-speak. It's hard to figure out. 

On the service thing--maybe you can find a county program that has a group home or work crew, and then ask those people if they have some recommendations. They may not have a program for you, but they might know people that are really good at working with kids to do things at home or in the community with your son. I think sometimes the really good people are not doing the respite work, KWIM? They were doing full-time work in an adult group home, working as a job coach FT, etc. That doesn't mean you can't find someone good--some of the scholarship providers also do county work. Ours does, but she has a different entity for it with a different name for the sake of hoop jumping.

8 hours ago, Lecka said:

I’m going to add I learned a little about an area I think is called “life skills coaching.”  

Where we used to live, there was a community college about 2 hours away that had an autism program, where they offered supports and they offered classes that were non-academic, so some students might be taking a mix of academic and non- academic, some might take nothing non-academic but participate in some of the life skills-type things, and some might not take any academic classes.  

It was for ages 18-26 iirc — I know 26 was the oldest age.  

Anyway — I called and talked to the man who ran this program, and it turned out one of his kids had Aspergers.

Anyway — I got a name from him for a psychologist in my home state (neighboring) who offered some services for life skills for adults.  

So the model this psychologist used was — she had a list of life skills tasks and had them written up so it would be easy to say “here is the current skill level, here are some appropriate goals.”  

And then the parent would need to locate and hire staff for 5-10 hours a week.  

This psychologist didn’t offer the service of “you pay me, and then I employ them and pay them and all of that.”  

She suggested hiring through the College of Education at the local university and it came across like — parents found people that way.  

Then she would offer training and consultation to the worker, and do the goals and the programs (an activity to practice the goal).  

  

Anyway — sometimes too there are books published that have lists of skills, programs, take analyses, etc, and you can buy a book and then use it to generate goals and programs.  AND this is where — maybe the lsw could hook you up with a book with this info, to where a lot would be pre-done for you, but have decent lists and activities — where maybe the lsw has been to a conference and heard about good resources, and then she shares them with you, and it is what you need.  

This can be a model, too.  

Or maybe you do look for an agency where they hire, they pay, they design programs, etc, and you don’t have to do any of that.  My son’s ABA agencies have been that way.  

I’m going to add..... I know where we used to live “navigating the community” could be a goal and could include everything from crossing streets to using public transportation, which meant calling for a van service for people with disabilities, and talking to the people on the phone and then riding independently.  And that would be something where it was set up like — they might do the same thing for weeks, so it’s not like you have to re-write the program every week.  

Like for example — we lived walking distance from a park and a Dairy Queen, and my son could pick where to walk, and then they would go, and for either place he would be practicing walking on the side of the road, noticing when to stop and watch for cars, etc.  But for months it was “practice x skills,  by doing one of these two things.”  It took brainstorming to come up with it, but then it was smooth for months afterward.  

And surprise-surprise, he found Dairy Queen and the park both very motivating, so he wanted to walk good/safely so he could get there.  Edit:  this is one of those “natural” programs that I find to take so much thought and planning, that I feel like “hey that is a big fat ABA program with a task analysis and levels of prompting and increasing independent practice of skills” but it’s also just walking to the park.  

Edit:  and I needed him to walk safely so I could do things like park in a parking lot to pick up my older son from things!  

Agreeing with this kind of idea. 

2 hours ago, PeterPan said:

All this starts with RELATIONSHIP and that is what gives them the trust, the street cred, to make demands (asking him to do things). If there is no pairing, no relationship, then it's more like prison guard shouting things at you, which is just going to raise opposition.

My ds eats up 1:1, so I don't think it's ever wasted. And ironically, the person does NOT have to be making an extreme amount of demands for my ds to come out better. Having one relationship go well (with the worker) makes the rest of the relationships go well. So it's less about them making demands and more about them building relationship and slowly making small demands. And if he likes to eat, then maybe start there. When do his meds wear off? Is he hungry later? Maybe have them problem solve the problem he feels he has. Like if his meds wear off at 8 and he's hungry THEN, then that's what he wants to plan/shop/prep for, not a dinner that he's not hungry for. But maybe make it social, like a food he can buy/prep and share.

Yes. This.

OTOH,  maybe you can get a prison guard and get the ODD to show up. JUST KIDDING. 😉 

You can do this. I am sorry it's so hard.

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48 minutes ago, kbutton said:

OTOH,  maybe you can get a prison guard and get the ODD to show up. JUST KIDDING. 😉 

Haha, I know someone (sorta, acquaintance) who works at a jail, carries a sidearm. I think she coaches too. Might give her good skills for working with kids? And dd's career testing showed prison worker was actually her HIGHEST PAYING recommended profession. Right behind it? High school english teacher, haha.

Now an intervention specialist tends to be more 1:1, relational. Beyond that, a lot of school workers seem to talk at kids, even in the therapy dept.

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52 minutes ago, kbutton said:

I am going to post this link again because it might be a good one for conversations: https://www.amazon.com/dp/0470259361/?coliid=I3VIME5RLL8IOF&colid=3494X931L2H07&psc=1&ref_=lv_ov_lig_dp_it

If you look in the frequently bought together section, there are other books by the same author for LIFE SKILLS, not just social ones. They claim to be ready to use lessons. Our ABA liked them as a starting point with my son--it was sometimes too low of a level for him (he would not qualify for board of DD help), but she used it as a jumping off point for discussion, and my son liked the lessons a lot. 

Ooo, I like those!!! I'm going to look at the other books by that author too, definitely. That workbook hits ds right where he is and worksheets are SO good for us. They're easy to structure, easy to make happen. And she's putting words to things he's doing that our behaviorist is identifying clinically (control dynamics, etc.) without giving a lot of tools to nail it. And there are lots of ways, sure, but right now I'd be on board with an explicit, idiotproof way, lol.

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2 minutes ago, kbutton said:

I can totally see her having the skill set, honestly. LOL! 

Actually she's talking about it. She really loves where she is right now, and there's a prison. Like no joke. She could work in her strong interest on the side (since she's not really fast enough to do it in a living wage kinda way) and work the more straightforward job during the day. It's seriously on the table. We're just talking through how that happens, how long-term it is, what the structure for advancement is through there, etc. We don't want her to get in there and realize she's bored or that she could progress to another level that she'd enjoy if she finished out her degree. But it's actually on the table, yes.

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55 minutes ago, kbutton said:

You can do this. I am sorry it's so hard.

For me it was hard maybe the first two years. I just couldn't wrap my brain around what I was trying to do with workers. Now I get it, so I'm like ok, I get what we're trying to do and why. But Story doesn't have so long for the learning curve, which is maybe part of the stress. 

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56 minutes ago, kbutton said:

I think sometimes the really good people are not doing the respite work, KWIM?

This is true. We have multiple great work for SN programs here in the big city. One is really up and coming. They're going to have a community and work in the community they live in. The vision is BIG.

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58 minutes ago, kbutton said:

I hate to say, "Stroke his ego," but if you struggle to channel his strengths, or he doesn't use them for good, some form of making him feel needed or flattered could be a way to bridge the skills he has to a source of motivation. 

It's also that working with a fresh person is a fresh start, a fresh relationship. They don't know how he was in the past, so he gets to start over and get those positive vibes from the good he does. Even as parents, we remember everything the kid did and it colors the relationship. Fresh can be good, positive. It can change how they view themselves.

A lot of our work has been about resetting what my ds thinks is his normal. The medications/biomedical, the workers, everything is about resetting that so he views himself and what he can be a different way.

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53 minutes ago, PeterPan said:

It's also that working with a fresh person is a fresh start, a fresh relationship. They don't know how he was in the past, so he gets to start over and get those positive vibes from the good he does. Even as parents, we remember everything the kid did and it colors the relationship. Fresh can be good, positive. It can change how they view themselves.

A lot of our work has been about resetting what my ds thinks is his normal. The medications/biomedical, the workers, everything is about resetting that so he views himself and what he can be a different way.

Yes! That's so true!

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3 hours ago, Pen said:

Could you hire a behaviorist to work on county goals instead of someone who answers an ad?  Or maybe a behaviorist in training?

What I think is that I would need to hire a behaviorist privately to consult with, and that they could help figure out the best things for the county worker to do.

County funding pays the worker directly, and the pay would be way too low for a behaviorist. For our teacher whom we selected to be the worker, the county pay is less than half of what she charges by the hour to do tutoring. I think for tutoring, she charges $40, and the county pays workers $17 something.

$17 per hour sounds great for some people. It's a good wage for a college student, for example, because it is more than they would make in fast food or retail or other common college jobs. But for other people, it is low.

So I'd have to pay a behaviorist privately, or see if our insurance would cover it. Even if insurance would cover it, we have not met our deductible yet, so it would still be out of pocket.

It's okay for us to spend some money out of pocket, but there are so many things that we could do that for, that we have to prioritize and figure out the best choices.

Edited by Storygirl
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@kbutton  I put that book in my Amazon cart. It does look good!

The prison guard comment made me laugh. I actually have a friend whose sister is prison guard, and on the side, the sister runs an equine therapy program. But she lives across the country, so it's just an interesting fact that isn't of use to us.

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I'm amazed she's willing to do it for so little. I can get college and grad students for that but not independent adults. On the scholarship, I can bill an intervention specialist higher ($30-100 an hour), so that gets closer to what an adult expects. But yeah, you're not looking typically at college grads for that price.

So private pay around here I can get a behaviorist (not a phd BCBA) for $60 an hour. I think several of the big providers (everything under one roof) in our area have BCBAs.

It can take a few tries (or merciful grace of G*d and a good recommend) to get the right fit. It's not just the profession but the mindset, if that makes sense. It could be another reason why you're not getting recommends, if the psych only knows die-hard, strict DTT type BCBAs and hasn't got a name to GIVE you, kwim?

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Crazy story...

Today, I called the counseling center where my relative works, to speak with the intake people and find out about scheduling an appointment to determine which of their services we might use for DS15. This place has an autism center but also does general counseling, and it was on the list of places to look into for my other child, DD14, who needs some help with anxiety. So I decided we might as well set up appointments for both of the kids.

I started to answer their basic questions, and to my surprise, and the surprise of the intake person, DS15's name, address, and insurance info was already in their system. We talked quite a bit about how weird this was, and I speculated whether either the pediatrician or the psych who did the evaluation had submitted a referral without me being aware. After going through all of the detailed questions about why I was calling and what his diagnoses are, etc., the intake person switched to the appointment schedule, and lo and behold, DS15 was already on their schedule for three weeks from now!!!

Neither of us could figure this out, and again, we chatted about it kind of jovially. I even had a moment where I wondered whether I had, in fact, set this all up already and had erased it from my memory (this was an unpleasant moment for me, because Alzheimer's runs rampant in my family). Getting both kids onto their schedule took about half an hour.

After that, I called DH to tell him about this weird thing that happened, and to let him know to check his work calendar for the dates of the two meetings, to make sure that he could go.

You probably see where this is going. It took me longer to pick up the clue phone. Yes, DH had set up DS15's appointment LAST WEEK and had not told me.

It was really a big mix up, because he had taken on the job of calling a few places to see about counseling for DD14, NOT -- I repeat NOT -- DS15. Because he and I had not come to a conclusion yet about what we were doing for DS15. I knew he had left messages at a few places about DD14 but hadn't talked to anyone personally yet.

So it turns out that a week ago, this place called him back, while he was out of town on a business trip, and he scheduled this appointment and forgot to tell me.

But the appointment he was supposed to be scheduling was for DD14; he didn't do that and instead made one for DS15.

And then he listened to me talk and talk and worry and fill him in on advice people were giving on this thread. Did I say worry???  How agitated I've been about figuring out the best place to get help for DS and whether a social worker was the right choice, and on and on. And how I had emailed my relative and gotten advice about contacting THIS VERY PLACE. On and on for a week.

And the whole time, he already had an appointment set up?

I am really glad that we now know the first step we are taking (it's really the 10,000 step on our journey, but the first step with the new recommendations and diagnosis). But I am also seriously annoyed.

Glad. Annoyed. Both. I think I can't help feeling mostly annoyed today. Hopefully tomorrow I can switch more easily over to the glad side.

Edited by Storygirl
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It is a good thing you happened to call there and find out about the appointment!

I would be really, really frustrated as well.  

But it is still nice to have a pretty-close appointment, and if it works out, it is going to be so nice to have two kids at the same place, and have the social worker and psychiatrist (?) at the same place!  It sounds great!

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2 hours ago, Storygirl said:

lo and behold, DS15 was already on their schedule for three weeks from now!!!

What???!!!??? 

Well it's all happy and good then. You have an appointment and a shorter wait and it all worked out. I can see you're annoyed, but it's pretty funny, hehe. Can you imagine if your dyslexic 14 yo had showed up and wondered she was at a pdoc? LOLOLOLOL

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Is there any group therapy near you?  My son does ind. counseling, but I think he has gained the most growth from group therapy with other teen boys on the spectrum.  I can elaborate more later, but throwing that out there.  

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We'll ask about group therapy when we do our intake appointment in a couple of weeks. He had a short-term (6 weeks) group social skills club that he attended a year ago, and he hated it. I don't know why, really; he couldn't say anything other than he thought it was "dumb." Interacting in a group is really hard for him -- the more people; the more likely he is to clam up. He has trouble reading nonverbal communication, and with more people and more nonverbals to read, he just shuts down (or at least that is my theory about why he talks more with fewer people, based on the fact that he has NVLD).

So, I think group therapy would be really good for him, but it would also be really hard. The evaluator said that she has run groups with teen boys before (in a previous job, I think), and that it would be good for him to do it sometime in the future.

Right now, he is finishing up a three week job training course, which is a group experience, and he likes it. That's interesting. I wonder why he doesn't hate it like he hated the social skills group. I should probably call the leader of this course and ask how he did with interacting as a group member. I did have a short conversation with her last week, when she came to the car to tell DS that he had left his lunch inside. She told me he is very quiet and is very hard to talk to during his practice interviews, which is not a surprise at all; it is why we are starting him on vocational rehab already when he is only 15. But those comments were about how he is relating to her as the adult leader; I'm wondering how much he is interacting with the other teens. DS does talk a bit about one of the other boys (by that, I mean, he has made two or three comments about him over the three week period).

I think that if we can get him into group therapy that he likes, that it would be really good for him. I think that if we try group therapy, and he dislikes it, he will be resistant to trying a different one. So we will have to be careful. And I don't even know how to be careful about it, other than to get advice from the counselor.

In the long run, I think group therapy, where he feels comfortable, may be better for him than individual counseling, because he does especially poorly when talking one on one with adults, unless he knows them extremely well.

Getting him comfortable with a counselor enough to talk to them is going to also be a challenge. I think if he likes the person, his comfort level will increase over time. If he does not bond with the person, he won't give them a chance.

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