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gardenmom5
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dudeling is 14 (asd, add, capd, ld, anxiety), and has been in school for my sanity, and having a team to work with him.  (instead of just me.) I may hire someone just to help get a stronger IEP.  

he's very resistant to us helping him with school work.  I have done the tutoring center one on one - I'm willing to pay for it, but he will just put his head down on the desk and ignore them.  dh isn't willing to pay for that.

I'm trying to be more positive with my time with him - he hates the science center, hates the zoo, used to like the museum of flight - now he hates that too.  he just wants to sit in the basement and play on the computer.  I've shut it down, and I've taken his phone (which was more for a "phone" - with texting. no data. it is a smart phone - so wifi.  I'm thinking a basic phone would be more appropriate) 

he is now refusing to go school.  it started just before the semester was over, and he's been in and out.  he is very big on contests of wills - so I know this is one I could easily lose.  this is about school itself - not other kids.

he is afraid of high school - where grades count.  right now - I don't care about grades, I wish he would just turn in his work. everything is supposed to be on the laptop, but fewer and fewer teachers are actually using it.  I've started sending a sing-in sheet for him to take to his teachers with his homework (the districts system will only tell me what assignments are overdue. so not helpful.)

he has one class he really likes (python), and one he ok likes (rocketry).  he's missing them too.

he had been claiming he was tired all the time.  I took him off antidepressants (because of side effects - and after he started being more difficult), and there is another rx where a side effect is sleepiness - at this point, I think it's just an excuse.  I'm not sure any of his meds have actually been helping. - especially when he just gets progressively more difficult.  I had an appointment with the psych with our insurance - the dr was sick and it got rescheduled for may.  (after having waited six weeks for this one).  his neuro-psych (not with our insurance) who specializes in children/teens with developmental disabilities  - is stumped.

he's hardly social and is home outside of school.  I keep a close eye on him, so I know recreational drugs are not happening.

 

any suggestions, tips, options?

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What does he do all day when he's not at school? I'd be inclined to make sure you know that he's NOT on the computer screwing around or doing any gaming. 

How does he evade going to class? What's he DOING?

Are there consequences you could apply that would motivate him to go to class? (I.e., take away privileges, his phone, his computer, etc.)?

Is there a school option that wouldn't rely on the computer, so you could take that away? If you HAVE to let him have the computer, I'd hire a PRO to install nanny-ware that would allow you to both monitor and control his use of it to make certain he could only use it for school. (You could have a second "family" computer in the kitchen or similar area that he had very controlled access to in order to do "fun stuff" as a reward and under your supervision/control.)

TBH, I'd be inclined to consider a more intensive therapeutic environment. I have struggled a lot with one of my (neurotypical) kids, and if I had the added complexities of a handful of serious diagnoses, I'd definitely seek professional guidance on a day to day basis to get him on a better path. You could have a FIT with the insurance-approved psych and insist on being seen NOW (I know I would, and you might have already . . .) . . . or seek some sort of in-patient assessment/treatment or therapeutic school. I know that sounds extreme, to me, but, TBH, that's the direction I'd go if I couldn't control his daily behavior to at least get to school and go to class (the vast majority of the time). I'd be looking at the clock, thinking I only had 3 more years to get him "in hand" before he's out of my control and at high risk of imploding. 

(((hugs)))

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ABA? 

What happens if he just doesn't/won't get on the bus? If you normally take him to school, you might need to find out if refusing to get on the bus could be something that gets him additional services or referred for different options. The school can probably make it your problem if he won't get in the car, but if he won't get on the bus, then maybe they have some calls they can make. Maybe they will have to pony up and provide supports.

He doesn't sound like he's getting enough support in school. Tutoring is only going to be good if it takes his needs into account. Even very hardworking and fairly compliant kids with ASD will shut down if they know they aren't able to do what is expected and are not being supported. My experience is that not everyone who is qualified to tutor knows what to do with ASD shutdowns, regardless of type of degree (intervention specialist, etc.) unless their degree involves serious work with kids on the spectrum. And even then, our experience has been dicey--like the person realized language was an issue, but still expected success that wasn't possible, which led to more shut downs.

Does he qualify for some kind of board of DD help (different states have different names, but it would be services for his ID and ASD). He sounds like a shoe-in for long-term help. Depending on state rules, documenting this stuff would probably at least get him on a waiver waiting list with some services provided now. It might be an emergency waiver if he just won't cooperate with anything. 

But school refusal is something that needs to be brought up with the school. 

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Is there any legitimacy to his concerns and are there any options (way out of the box) to deal with them? Like what if this year's placement was ok and it's NOT an ok placement for next year starting high school? If worrying about next year is shutting him down now, then maybe try to solve that.

I think high school is an ok time to reimagine the plan and see where this is really going. I would have that discussion. Some kind of really alternative plan that helps him develop marketable skills and fill some gaps in his social thinking and self-advocacy would probably be more useful than a school-generated high school diploma. It could be an option to go farther out of the box than you had thought before. If it would lower stress now, it would be an option. It's NOT too hard to get everything he needs using his one perseverative interest. I mean, nuts, people make a living using coding, right? I'm not up on all the languages anymore, but it's not such a dumb option. And the rocketry gig gives you an in for science. You've instantly got at least 2 years of high school science there, boom, just by milking that. And you make deals like must use a tutor for math and must come out with a marketable job skill and must go to social thinking sessions and self-advocacy sessions. Beyond that, just make it look right on paper. Everything he reads is lit, everything he discusses online is writing, and he has electives. You turn what he's really doing into a transcript.

I would not fight it. That's all I'm saying. I don't see how you win a fight, and he might actually be right that the writing is on the wall that what was ok/survivable before isn't going to be the right path going forward.

But that's the way out of the box answer. But I would consider it. What will matter to you in 4 years? What if he drops out? He has the legal right to. Then what did the fight get you. Think about what REALLY MATTERS and focus on that.

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My son doesn’t have same issues yours does, so not sure anything that helped with him would help dudeling.

My son did this: 

https://www.nwyouthcorps.org/m/ourprograms/nwadventures

 

And it seemed to help enormously with anxiety and self confidence.  No electronics were allowed, so it helped get away from that too.  

Twice, in a row or early and late, in the summer might actually be useful — once to get the hang of it, second time to do it with more experience.  We had one person in Ds group who had been driven from Idaho for it, and iirc had had a prior summer experience in it too.

My Ds circled into another similar bout and this reminds me I was going to sign him up for the older kids summer program when I was derailed by snow storm and power outage.

———

next is to put relationship above school, etc.

perhaps even if that takes entering into his world of video games to some degree—though if he could harden with you that would be more healthy 

 

————

mine hasn’t refused school, so I don’t know on that...

schoolwide his school has had problems with absence and tardiness So instituted a rewards field trip for no tardy and no more than one unexcused absence in prior? Quarter?    So, for example, a bowling trip or trampoline place trip...  seems to be helpful 

maybe could suggest it to your school?  I think a trip with other kids may mean more than with mom?  Or maybe some thing could be found to be an incentive?

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I would look at the anxiety piece of this, have someone who is not you teach executive functioning skills (not just help with homework),  and strongly encourage a new meds evaluation.  School refusal can be addressed with an emergency IEP meeting. They may be willing to reduce academic demands to increase attendance, and/or  placing him on grading just as pass/fail is another common solution. Good luck!!

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4 hours ago, HeighHo said:

Is he in high school now?  If he's in middle, do some of his grades go on his high school transcript?  Is his team aware of his feelings about grades?  Is the school psych helping him with those feelings?   

Why is the academic support team not helping him be successful turning in his homework?

he's in middle school.  nothing counts. 

we're all brainstorming together.  he's  just as difficult and noncompliant with the spec ed as he is with every one else.

3 hours ago, StephanieZ said:

What does he do all day when he's not at school? I'd be inclined to make sure you know that he's NOT on the computer screwing around or doing any gaming. 

How does he evade going to class? What's he DOING?

Are there consequences you could apply that would motivate him to go to class? (I.e., take away privileges, his phone, his computer, etc.)?

 

he sleeps.  sometimes he'll read.  he has zero computer access.  (1ds is an engineer.  dudeling isn't capable of getting past him.)  I had shut it down with the caveat he can have time as homework is completed.  he's done some occasionally stuff - but hardly anything.

I have driven him to and from school every day so he wouldn't get the idea he couldn't "not" go to school.  he figured it out.  a couple weeks ago (when they were supposed to register for high school), he walked out of the building and walked home.  he didn't talk to his spec ed teacher, he just left.  he's never done that before.

his anxiety is very much the control freak variety - he won't answer questions to even get information of what is going on to try and help him.

2 hours ago, freesia said:

It sounds to me like depression and maybe anxiety.  I, too, would see if the psych. could see him earlier.

definitely anxiety - and we also suspect depression.  we have a private pay neuro-psych that he saw last week - but she is very ($$eek$) every single visit so I was looking to see if it was possible to switch him to a provider with our hmo.   I have a new antidepressant for him - but he  was complaining of massive headaches.  might have been the drug, might have been coming off the old one, might have been viral.  might even be a different rx.

I want to give him some time away from the old one before restarting the new one to see if that makes a difference.

1 hour ago, kbutton said:

ABA? 

What happens if he just doesn't/won't get on the bus? If you normally take him to school, you might need to find out if refusing to get on the bus could be something that gets him additional services or referred for different options. The school can probably make it your problem if he won't get in the car, but if he won't get on the bus, then maybe they have some calls they can make. Maybe they will have to pony up and provide supports.

He doesn't sound like he's getting enough support in school. Tutoring is only going to be good if it takes his needs into account. Even very hardworking and fairly compliant kids with ASD will shut down if they know they aren't able to do what is expected and are not being supported. My experience is that not everyone who is qualified to tutor knows what to do with ASD shutdowns, regardless of type of degree (intervention specialist, etc.) unless their degree involves serious work with kids on the spectrum. And even then, our experience has been dicey--like the person realized language was an issue, but still expected success that wasn't possible, which led to more shut downs.

Does he qualify for some kind of board of DD help (different states have different names, but it would be services for his ID and ASD). He sounds like a shoe-in for long-term help. Depending on state rules, documenting this stuff would probably at least get him on a waiver waiting list with some services provided now. It might be an emergency waiver if he just won't cooperate with anything. 

But school refusal is something that needs to be brought up with the school. 

I drive him.  I've contacted his spec ed lead, -she's looking into options.

I don't think he's getting enough support either - but I've no idea what is available. I know they have a closed asd group from elementary through high school, but he hasn't been considered severe enough for it.  I was just reading local news reports about how many spec needs kids in our state- DON'T get the help they need.  and I'm in one of the better school districts in the state.

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Just to make sure I understand correctly: After you took everything away that he cares about or likes (Computer, phone, other electronics) he is now withdrawing and sleeping?

I think getting meds balanced is number 1 priority. 

Does he respond to you and your dh when you guys explain boundaries? Is there a dialog - even if heated or is he completely apathetic? 

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Honestly he sound VERY depressed and anxious. And given that, my first priority would be mental health. Education would be WAY down the list. He can make up work, but suicide is a real issue in adolescents on the spectrum. 

My kid? I'd pull him from school, and focus 100 percent on mental health. No chores, not school. Self care. Getting outside (walking a dog?  reading a book outside in the sunshine? walking a neighbor's dog?) and getting fresh air and sunshine and exercise (gentle is fine).

Eating well.

Sleeping well.

Meditation or yoga or martial arts if at all possible. 

And my number one suggestion - volunteer work! I swear it helps so much, especially if with animals. I think kids on the spectrum do so well with animals (obviously there are exceptions). There are no social expectations, no anxiety of saying the wrong thing, and the dog appreciates them. Or whatever animal. My son's volunteer work at a bird of prey rehab center literally saved his life. 

Also for kids with ADHD having that IMMEDIATE feedback gives them a sense of accomplishment. Instead of "study this so that in 4 years you can get into a good college and then 4 years after that you can get a good job) you have "put this food into a bowl and then see the dog eat it. Dog was hungry, now he isn't hungry." Or "shelves were empty, now they are full because I restocked them" at the food pantry. IMMEDIATE sense of accomplishment. They are needed. They are making a difference. Best therapy in the world for some kids. Seriously. 

So yeah, what we did was stopped school. Got him volunteering 3 days a week (I did the research and gave him 3 options, he picked and I drove him there. I would have done it with him if that would have helped him start.). His volunteer job was mostly outside, so that did double duty, but if not I'd get him outside somehow. Made sure he ate and drank and slept. And other than that did NOT complain about anything he did, and did focus on all his was doing right. Told him how proud we were of him. Made a big deal of his volunteer work. 

Seriously, school will always be there. But mental health, that's serious. If he had a terrible illness and couldn't do school you would figure it out and put it off. Same with mental illness. 

My son now is working full time at an animal clinic and is going to college in the fall to pursue his veterinary technology degree. 

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4 hours ago, Pen said:

mine hasn’t refused school

That's the thing. My ds is so far in his own mind, his own track. He does the stuff I put in front of him right now, but it's nothing like a regular school kind of gig at all. I can totally see him turning down things completely at some point. I've been thinking about that lately, like how I transition this, how maybe I get him to think of what we're doing now as stuff we do because we like to, not stuff we do because it's foisted on us. And to a degree it is and that's basically the only reason it works. 

That's just a ramble. I'm just saying my ds is headed to be like the op's, and what I described is probably what we'll have to do. There is no benefit to my ds to fighting it, never has been. He's going to have to be set up to have a good life, whatever that looks like. That's what I'm more concerned about.

Can the kid cook or does he have any life skills? Might be mighty important stuff to be doing. I'm teaching my ds to wash windows. That stuff sounds stupid, but you really are going to have a hard time living independently with zero life skills. School really gets in the way of developing a life. My ds has a plenty bright IQ, and when I said hey let's wash this glass door, he was totally flummoxed. 

Anyways, that's just a ramble.

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1 hour ago, Ktgrok said:

And my number one suggestion - volunteer work!

I love this on so many levels. I'm reading this Motivation Breakthrough book, and he talks about different kinds of motivation (projects, people, etc.). And I think about the disconnect from the community you feel with autism and the decreased opportunities to feel like you're helping or contributing or bringing value. It's just so good on so many levels, love it, and I'm so elated for your ds. It's a great model for us a few years behind. :wub:

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2 hours ago, Ktgrok said:

Honestly he sound VERY depressed and anxious. And given that, my first priority would be mental health. Education would be WAY down the list. He can make up work, but suicide is a real issue in adolescents on the spectrum. 

My kid? I'd pull him from school, and focus 100 percent on mental health. No chores, not school. Self care. Getting outside (walking a dog?  reading a book outside in the sunshine? walking a neighbor's dog?) and getting fresh air and sunshine and exercise (gentle is fine).

Eating well.

Sleeping well.

Meditation or yoga or martial arts if at all possible. 

And my number one suggestion - volunteer work! I swear it helps so much, especially if with animals. I think kids on the spectrum do so well with animals (obviously there are exceptions). There are no social expectations, no anxiety of saying the wrong thing, and the dog appreciates them. Or whatever animal. My son's volunteer work at a bird of prey rehab center literally saved his life. 

Also for kids with ADHD having that IMMEDIATE feedback gives them a sense of accomplishment. Instead of "study this so that in 4 years you can get into a good college and then 4 years after that you can get a good job) you have "put this food into a bowl and then see the dog eat it. Dog was hungry, now he isn't hungry." Or "shelves were empty, now they are full because I restocked them" at the food pantry. IMMEDIATE sense of accomplishment. They are needed. They are making a difference. Best therapy in the world for some kids. Seriously. 

So yeah, what we did was stopped school. Got him volunteering 3 days a week (I did the research and gave him 3 options, he picked and I drove him there. I would have done it with him if that would have helped him start.). His volunteer job was mostly outside, so that did double duty, but if not I'd get him outside somehow. Made sure he ate and drank and slept. And other than that did NOT complain about anything he did, and did focus on all his was doing right. Told him how proud we were of him. Made a big deal of his volunteer work. 

Seriously, school will always be there. But mental health, that's serious. If he had a terrible illness and couldn't do school you would figure it out and put it off. Same with mental illness. 

My son now is working full time at an animal clinic and is going to college in the fall to pursue his veterinary technology degree. 

This.

For my family mental health takes priority over everything else, including academics.

Mental health is impacted by so many different factors--nutrition, sleep, exercise, sense of purpose, social connection, time in nature--to name a few. A year or two during the teen years with little academic progress is a minor glitch, not a major disaster. Deteriorating mental health is a true crisis.

I don't know that I have one single child with as many challenges as your Dudeling but I've got an entire houseful with apparently problematic genetics and tendencies towards ADHD, anxiety, OCD, Tourettes, and ASD traits. Keeping them physically active and socially engaged is where the vast majority of my efforts go.

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21 minutes ago, StellaM said:

 Is it the one by Richard Lavoie ?

Yup, it has been kinda blowing my mind. I'm probably way behind the times, but there you go. I don't even know how I found it. Probably someone on the board mentioned it. I read the end chapters on the value of chores and community contributions, then the chapter on power. Now I need to read through the other motivators. It seems to be pretty spot-on for our house, so I'm making notes, lol.

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I've been following this with interest, as we're in a similar, not identical, place. Similar elements being 14yo asd kid with multiple diagnoses, including anxiety. Mine will be returning to public school next year for multiple reasons, but strongly resists the whole idea. We get the head-on-desk and sleeping-all-day reactions when things feel overwhelming, so I can relate. We are having school refusal, too, because dd says that I have decreed she's going back to public school next year, so she's done with homeschool. Spectrum kids are great at being absolute.

10 hours ago, Ktgrok said:

Honestly he sound VERY depressed and anxious. And given that, my first priority would be mental health. Education would be WAY down the list. He can make up work, but suicide is a real issue in adolescents on the spectrum. 

My kid? I'd pull him from school, and focus 100 percent on mental health. No chores, not school. Self care. Getting outside (walking a dog?  reading a book outside in the sunshine? walking a neighbor's dog?) and getting fresh air and sunshine and exercise (gentle is fine).

This is where we are.

We're spending hours every day letting dd volunteer with animals. It's partly outside, and involves some exercise. It involves some, limited, dealing with other humans, who are kind adults who nonetheless have expectations. It means dd has a responsibility which she takes very seriously. This is the best thing in her life right now. She is proud of what she's doing. 

Could I motivate her to do school by threatening to take this activity away? Maybe. But-- the schoolwork really is overwhelming for her. The difficulties are not a product of her imagination. She will not be magically able to cope because I take away her activity.  She needs more help and support, and that's why we're going through getting accommodations for next year lined up now. Medication might help, but she's refusing it, and she's too big to force. So-- mental health comes first here.

A book I've found which might be helpful for you, too:

https://www.amazon.com/Asperger-Syndrome-Adolescence-Practical-Solutions/dp/0967251494/ref=mp_s_a_1_2?crid=3B3W25X85QCOI&keywords=asperger+syndrome+and+adolescence&qid=1553256784&s=gateway&sprefix=asperger+syndrome+and+&sr=8-2

Good luck. I don't really have any solutions, but I am walking the same sort of path. I hope you can find some things to help your ds. If computers give him joy, I'd try to find a way to give him some access, probably in a public part of the house and under some supervision. Maybe there's some computer -related work he could do for someone? And some way to get outside, and get some exercise. Anyway, good luck.

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Yes to giving him joy!

And I also wonder if you've explored meds for the ADHD. Although anxiety/depression can cause ADHD symptoms, the opposite is also true. If the depression meds were not helping, maybe you were treating the wrong thing? For my son and I ADHD meds really are a key part of being healthy. ADHD can effect the ability to regulate emotions (the crying) and because we know we suck at deadlines/etc we have huge anxiety around them. My ADHD also effected my ability to remember people's names, which contributed to social anxiety. Just a thought. 

That said, my son had to get a bit better before he was willing to try medication. The volunteering is what helped him get to that point. 

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10 minutes ago, Innisfree said:

I've been following this with interest, as we're in a similar, not identical, place. Similar elements being 14yo asd kid with multiple diagnoses, including anxiety. Mine will be returning to public school next year for multiple reasons, but strongly resists the whole idea. We get the head-on-desk and sleeping-all-day reactions when things feel overwhelming, so I can relate. We are having school refusal, too, because dd says that I have decreed she's going back to public school next year, so she's done with homeschool. Spectrum kids are great at being absolute.

This is where we are.

We're spending hours every day letting dd volunteer with animals. It's partly outside, and involves some exercise. It involves some, limited, dealing with other humans, who are kind adults who nonetheless have expectations. It means dd has a responsibility which she takes very seriously. This is the best thing in her life right now. She is proud of what she's doing. 

Could I motivate her to do school by threatening to take this activity away? Maybe. But-- the schoolwork really is overwhelming for her. The difficulties are not a product of her imagination. She will not be magically able to cope because I take away her activity.  She needs more help and support, and that's why we're going through getting accommodations for next year lined up now. Medication might help, but she's refusing it, and she's too big to force. So-- mental health comes first here.

A book I've found which might be helpful for you, too:

https://www.amazon.com/Asperger-Syndrome-Adolescence-Practical-Solutions/dp/0967251494/ref=mp_s_a_1_2?crid=3B3W25X85QCOI&keywords=asperger+syndrome+and+adolescence&qid=1553256784&s=gateway&sprefix=asperger+syndrome+and+&sr=8-2

Good luck. I don't really have any solutions, but I am walking the same sort of path. I hope you can find some things to help your ds. If computers give him joy, I'd try to find a way to give him some access, probably in a public part of the house and under some supervision. Maybe there's some computer -related work he could do for someone? And some way to get outside, and get some exercise. Anyway, good luck.

computer games/screens have a dopamine and adrenaline effect upon the brain.  it's one reason adhd kids like to play computer games so much - it's a form of self-medication.  in the long term - it is not helpful, and can be damaging.  

I'll check out the book.

4 minutes ago, Ktgrok said:

Yes to giving him joy!

And I also wonder if you've explored meds for the ADHD. Although anxiety/depression can cause ADHD symptoms, the opposite is also true. If the depression meds were not helping, maybe you were treating the wrong thing? For my son and I ADHD meds really are a key part of being healthy. ADHD can effect the ability to regulate emotions (the crying) and because we know we suck at deadlines/etc we have huge anxiety around them. My ADHD also effected my ability to remember people's names, which contributed to social anxiety. Just a thought. 

That said, my son had to get a bit better before he was willing to try medication. The volunteering is what helped him get to that point. 

we've been doing rx for the add too. not sure how much it is helping - but the computer games can completely derail meds.  I feel like if we could get the anxiety under control., it would make it easier to work on other areas.

he will talk to me - sometimes.    

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5 minutes ago, gardenmom5 said:

computer games/screens have a dopamine and adrenaline effect upon the brain.  it's one reason adhd kids like to play computer games so much - it's a form of self-medication.  in the long term - it is not helpful, and can be damaging.  

I'll check out the book.

we've been doing rx for the add too. not sure how much it is helping - but the computer games can completely derail meds.  I feel like if we could get the anxiety under control., it would make it easier to work on other areas.

he will talk to me - sometimes.    

In our case we found the gaming/self medicating was a symptom, not the root problem. So getting rid of the gaming never worked, but giving him something else - the volunteering - took away the need for him to self medicate and the gaming got better on its own. 

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1 minute ago, Ktgrok said:

In our case we found the gaming/self medicating was a symptom, not the root problem. So getting rid of the gaming never worked, but giving him something else - the volunteering - took away the need for him to self medicate and the gaming got better on its own. 

I know it's a symptom - but he won't do anything else.

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10 minutes ago, gardenmom5 said:

computer games/screens have a dopamine and adrenaline effect upon the brain.  it's one reason adhd kids like to play computer games so much - it's a form of self-medication.  in the long term - it is not helpful, and can be damaging.  

I'll check out the book.

we've been doing rx for the add too. not sure how much it is helping - but the computer games can completely derail meds.  I feel like if we could get the anxiety under control., it would make it easier to work on other areas.

he will talk to me - sometimes.    

I agree with you about screens, though I have wondered sometimes if screens are better than being catatonic in bed (what my husband does).

I too feel like anxiety is at the root of most problems my family members experience, but then I want to know what is at the root of the anxiety--what physical mechanism is causing it and how can we mitigate that? I know you've put a lot of effort into the physical side yourself with genetic testing and supplements; I feel like we just aren't where we need to be scientifically to sort everything out yet. I have a massive medical textbook on dopamine research alone and there are dozens of neurotransmitters and it's only in the past few years that epigenetics is even being considered. Sigh.

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3 minutes ago, maize said:

I agree with you about screens, though I have wondered sometimes if screens are better than being catatonic in bed (what my husband does).

I too feel like anxiety is at the root of most problems my family members experience, but then I want to know what is at the root of the anxiety--what physical mechanism is causing it and how can we mitigate that? I know you've put a lot of effort into the physical side yourself with genetic testing and supplements; I feel like we just aren't where we need to be scientifically to sort everything out yet. I have a massive medical textbook on dopamine research alone and there are dozens of neurotransmitters and it's only in the past few years that epigenetics is even being considered. Sigh.

and now I've been learning about epigenetics - and wondering how much of that contributes to the problem.  in the years before he was conceived - my stress levels were through the roof.  and it was a miserable pregnancy  with a number of health issues on my side.

 

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1 minute ago, gardenmom5 said:

and now I've been learning about epigenetics - and wondering how much of that contributes to the problem.  in the years before he was conceived - my stress levels were through the roof.  and it was a miserable pregnancy  with a number of health issues on my side.

 

Yeah, I've wondered about epigenetics with my kids as well. All my pregnancies have been stressful, not least because dh's mental illness always spikes when I am pregnant (more anxiety workings...).

Regular old genetics are certainly at play as well given extended family history; we took advantage of holiday sales to order whole genome testing for Dh and ds13, I'm hoping something actionable will come of that (it's a long wait for results).

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I understand the posts that suggest homeschooling.

But if he refuses even to do homework for you, I don't see, realistically, how you would get him to do any academics without constant fight and struggle. I would personally keep him in school but explore options with the IEP team. And perhaps see if there is a private autism school in your area that might be a better placement.

One thing our vocational school has is a job training program that starts in NINTH grade. It is for a limited number of students for whom standard academics are not a good path but who need job skills. It is not the right placement for my son, so I don't know details, but they spend their day at the vocational school, doing academic and hands-on classes, and I think the idea is that it is a feeder into the regular vocational school that starts in 11th grade.

I know that vocational ed is different everywhere. But I would not have known about this program if I had not done my own research about job training. You might see if your vocational school offers any services for job training for ninth graders.

Because attendance is mandated by law and he has an IEP, the IEP team needs to make a plan to help work through this. You don't need to figure it out on your own. I agree that it may be worth it to hire an advocate or lawyer to make sure the IEP has enough support written into it.

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1 hour ago, gardenmom5 said:

I know it's a symptom - but he won't do anything else.

I know you cannot MAKE a kid on the spectrum do anything, but do try finding him something outdoors, volunteering, he might enjoy. Just to try. And maybe the carrot is that he can stop going to school for the rest of the semester. That was what we did. I told him he could stop school, as it was pointless at that point for him and I, but he had to be productive in some other way then, which meant either a paying job or volunteer work, and chores around the house. That it wasn't healthy to sit and do nothing (I had his doctor talk to him about depression as well, which I think helped). We had a really nice, not yelling or scolding, talk about learning self care, and that for the rest of the year his education would be learning self care, rather than academics. I'm sure he probably rolled his eyes a bit, but no one likes feeling depressed, so he kind of bought into it a bit. 

I tried asking him to find a volunteer job..that didn't work. What worked was me finding 3 choices I thought he'd like, and letting him pick, and then me arranging it and dropping him off. (he didn't want me to come with him). He got SO much outside validation, and Think he needed that. 

I will admit to being shocked when the volunteer coordinator would tell me how helpful he was, what a great work ethic, how they never needed to ask him anything twice. I was like...are you SURE we're talking about the same kid?!?! 

Best of luck. 

Be willing to think WAY WAY WAY outside the box. For some kids, the traditional path is never going to work, and it is not failure to choose a different journey. 

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4 minutes ago, HeighHo said:

You know,this is the time of year when public school teachers start mentioning high school expectations a lot.  Is it possible someone is exaggerating and your dc has fled?   In my district, they actually brought in a ex-cons one year to tell the dc what prison was like, and of course most mentioned how they rejected the opportunity to stay on grade level with their literacy while choosing instead to be punks......at that point the middle class parents all showed up at the next school board meeting.  We could understand that frustration of the teachers, but there was no excuse to assume that noncompliant students would end up in jail, as most of the noncompliant students were bored stiff with the low expectations and had started confronting teacher  asking why they were being given, for ex, novels that Accelerated Reader had labeled as well below grade level and having class time wasted with listening to audio versions of novels rather than read independently.  Have you had a team meeting or contacted the school psych? I'd be doing that ASAP..there is a trigger for this avoidance, it doesn't come out of no where. 

Very good point. Even a moderately stern lecture about the importance of high school that doesn't include drama can be really intimidating. Or a buffet of choices that the child didn't know exists--way too open-ended. 

Also, my son didn't (and still doesn't) completely understand credits and what that means. I think that's a big transition for many kids.

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10 minutes ago, HeighHo said:

You know,this is the time of year when public school teachers start mentioning high school expectations a lot.  Its also state testing time in some places.  Is it possible someone is exaggerating and your dc has fled?   In my district, they actually brought in a ex-cons one year to tell the dc what prison was like, and of course most mentioned how they rejected the opportunity to stay on grade level with their literacy while choosing instead to be punks......at that point the middle class parents all showed up at the next school board meeting.  We could understand that frustration of the teachers, but there was no excuse to assume that noncompliant students would end up in jail, as most of the noncompliant students were bored stiff with the low expectations and had started confronting teacher  asking why they were being given, for ex, novels that Accelerated Reader had labeled as well below grade level and having class time wasted with listening to audio versions of novels rather than read independently.  Have you had a team meeting or contacted the school psych? I'd be doing that ASAP..there is a trigger for this avoidance, it doesn't come out of no where. 

I've heard nothing of the sort - and he never goes to assemblies.

we've just started on the avoidance thing - so not a meeting yet.  I do know he has heard the "high school counts".

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26 minutes ago, gardenmom5 said:

"high school counts".

Think about how many moms we have here on the board who spend the entire year leading up to high school being worried about it. I can't even imagine what it's doing to kids if they're getting that message. 

I'll tell you, I went to a school that entirely tossed class rank and all the normal structures. They did grades, but they told us to ignore them. It was the MENTALLY HEALTHIEST THING for me. I had started in a different school where I was literally an A+ student, and it was kind of an identity thing. Went to this other school, and it was so freeing to take risks.

There are healthier ways to get through high school and ways to think of high school, but our culture right now is not there. 

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24 minutes ago, HeighHo said:

these messages aren't delivered in assemblies, the children hear most of them from frustrated teachers. Students don't often know that messages are delivered to the whole class rather than the just the students who aren't doing what they need to do...it can unnecessarily scare an average child into giving up.

You do not need to wait for a meeting to call any member of the instructional team or the school psych.

we're in the information gathering stage.

 

we had a meeting in February - but then he was going to tutoring...

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I don’t know what your area is like, but in my area, the local SPCA allows kids aged 14 to start volunteering, as long as their parents come, too.  At 14, they’re not allowed to work with the dogs, but they can work with the cats.  I have done this with one son.  You can show up early and help them clean the cat areas, or you can show up later and simply pet the cats.  That’s it.  You just show up between certain times and pet the cats.  So, volunteering with animals can be involved (cleaning) or very simple (petting.)

 

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3 hours ago, gardenmom5 said:

I know it's a symptom - but he won't do anything else.

 

My daughter (adhd) had a pretty terrible middle school experience -- not as severe a shut down as your son but pretty close. She refused to go to school some days, she refused to do homework, and she spent hours in her room on screens.  She managed to find screens even when we took them away from her (old kindle with a tiny browser -- she managed to get netflix on it!) . In retrospect (at the time we had no idea what was going on) she was severely anxious and depressed . Her EF was overloaded, it made her anxious all the time, and she could only find relief in screens.  She did not become addicted, puberty subsided and her EF skills and emotional regulation went up, but it was a dark time for all of us.  

A lot of it was the stress of not being able to handle all the work, some of it was social anxiety, and a lot of it was hormones wreaking havoc when combined with the adhd. 

I have no advice, the only thing that worked for us was keeping communication open and now she's working on the anxiety and perfectionism (and is on adhd meds which have helped the most).  She is finally able to compartmentalize unimportant things and prioritize the important things.  But at 14? We were pretty desperate and I had almost zero relationship with her.  I knew her door pretty well though.  

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4 hours ago, gardenmom5 said:

and now I've been learning about epigenetics - and wondering how much of that contributes to the problem.  in the years before he was conceived - my stress levels were through the roof.  and it was a miserable pregnancy  with a number of health issues on my side.

 

 

None of us really ever have a perfect environment. Just don't go there, it's sort of a dead end. Whenever I start down the road of self blaming, I remind myself that there are things I simply cannot change and I need to look forward and work on the present day and working on finding a growth path.

Have any of his therapists tried DBT or ABA? I like kbutton's suggestions. Some people assign a negative connotation to DBT because Linehan originally developed it for Borderline Personality Disorder (what I mean is that some people think those therapists who use DBT are working on the assumption the client has BPD) but its application has significantly broadened since then.

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31 minutes ago, Liz CA said:

 

None of us really ever have a perfect environment. Just don't go there, it's sort of a dead end. Whenever I start down the road of self blaming, I remind myself that there are things I simply cannot change and I need to look forward and work on the present day and working on finding a growth path.

Have any of his therapists tried DBT or ABA? I like kbutton's suggestions. Some people assign a negative connotation to DBT because Linehan originally developed it for Borderline Personality Disorder (what I mean is that some people think those therapists who use DBT are working on the assumption the client has BPD) but its application has significantly broadened since then.

DBT is great.

Also, we need to just get rid of the stigma around BPD. A person who has BPD is not somehow morally inferior to a person who has ADHD, ASD, depression, etc. The BPD label describes a cluster of symptoms just as other labels do.

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1 hour ago, Liz CA said:

 

None of us really ever have a perfect environment. Just don't go there, it's sort of a dead end. Whenever I start down the road of self blaming, I remind myself that there are things I simply cannot change and I need to look forward and work on the present day and working on finding a growth path.

Have any of his therapists tried DBT or ABA? I like kbutton's suggestions. Some people assign a negative connotation to DBT because Linehan originally developed it for Borderline Personality Disorder (what I mean is that some people think those therapists who use DBT are working on the assumption the client has BPD) but its application has significantly broadened since then.

no - you can go there.  epigenetics can shorten the telomeres - but there are ways of healing them with lots of nurturing.  I've sat him down and talked to him about the fact I've focused so much on helping him from the outside - we need to have more actual fun, and let him be a little boy.  (his emotional age is at least two years younger than his physical age.)  

we've both been sick - and now I have the flu. (glare) but I think that is one thing I will fight him on and force is back to a short daily yoga practice.  and I'm willing to give him rewards as he cooperates an does it - i think he will eventually find it does help and he'll be more willing.  yoga is also very therapeutic.

I've only tried the one counselor for him so far.  and he'd just go in and sleep... so the counselor would talk about strategies for dealing with anxiety in hopes that part of him was listening.  and considering he'd check out while reading him story books when he was four - I would just keep reading, and part of him was listening.

  

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2 hours ago, Jean in Newcastle said:

The biggest help for my Aspie was (still is) putting him on Lithium Orotate.  This is a supplement - not the prescription Lithium. 

we tried.  his ND was shocked at how low his lithium levels were "in the subbasement".  he responded poorly...

though I wonder if it's just bringing everything out.

It may be worth doing the dna testing - that does the subtesting for what drugs are helpful and what aren't based upon your dna.  

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1 hour ago, gardenmom5 said:

no - you can go there.  epigenetics can shorten the telomeres - but there are ways of healing them with lots of nurturing.  I've sat him down and talked to him about the fact I've focused so much on helping him from the outside - we need to have more actual fun, and let him be a little boy.  (his emotional age is at least two years younger than his physical age.)  

 

<Nodding head in agreement >

To me this sounds a right direction.   Nurture. Healing.  Fun.  Play.

will he accept any cuddles, back rubs, that sort of thing?

 

To extent outside world allows it, imo it’s best to try to go with emotional, not chronological age.   

 

 

1 hour ago, gardenmom5 said:

 

we've both been sick - and now I have the flu. (glare) but I think that is one thing I will fight him on and force is back to a short daily yoga practice.  and I'm willing to give him rewards as he cooperates an does it - i think he will eventually find it does help and he'll be more willing.  yoga is also very therapeutic.

 

Ugh, sick certainly no help.  

 

If he’ll do yoga that’s good.  

We were able to use images of Jedi taking even a short time for meditation (eg Star Wars scenes with Liam Neeson where he meditates briefly before confronting ___)  to get some short meditation practice in as a help when feeling anxiety.

We didn’t use anxiety prescription medication, but do use vitamins, supplements, etc

 

1 hour ago, gardenmom5 said:

I've only tried the one counselor for him so far.  and he'd just go in and sleep... so the counselor would talk about strategies for dealing with anxiety in hopes that part of him was listening.  and considering he'd check out while reading him story books when he was four - I would just keep reading, and part of him was listening.

  

 

That sounds reasonable, actually.  

Or maybe another therapist could be more effective?

Some people have mentioned ABA— I don’t have an ASD child, so don’t know a lot about it.  But I have known a couple of fairly high functioning ASD young adults who feel their experience with ABA was abusive to them.  I don’t know details.  But something along the lines of they felt it helped them to be externally more normal seeming at a cost to their inner core selves is best I can try to put words to what I think they were trying to express.  That might have been specific poor ABA therapists not a general problem.  I don’t know.  At least what your son’s therapist is doing sounds like low risk of harm. 

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Yes, you can still do a lot (and telomeres as well as telomerase are still being researched) and I am all for doing what we can but not getting stuck with things we cannot change because it tends to be counterproductive and saps energy.

It sounds like you are doing quite a bit and the most important thing seems to be finding the right therapist and therapy and approaches that will set him on a new path. Short-term goals may be going to school but long-term goals are life goals and as Peter Pan mentioned are essential. 

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11 minutes ago, Pen said:

Some people have mentioned ABA— I don’t have an ASD child, so don’t know a lot about it.  But I have known a couple of fairly high functioning ASD young adults who feel their experience with ABA was abusive to them.

There's ABA and then there's ABA.

The original form has been criticized, perhaps justly. I haven't had any experience with that form of ABA.

ABA as it is often used now is more of a broad umbrella term. Lots of techniques are used, but it's essentially positive reinforcement of desired behaviors coupled with careful, meticulous analysis of *why* behaviors are happening and how to replace less productive behaviors with others which are more productive.

In order to accomplish this, a good relationship between child and behaviorist (BCBA=Board Certified Behavior Analyst) is necessary. Two+ years after finishing ABA, dd still misses her BCBA. She found the sessions very enjoyable. I'm thinking of starting up again to help with the transition to school.

Others here can speak more authoritatively about ABA practices, but our experience was entirely positive.

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52 minutes ago, Pen said:

To extent outside world allows it, imo it’s best to try to go with emotional, not chronological age.   

There are also ways to delay the finish of school until there is a bit more synchronicity between chronological and biological age--kids with IEPs are entitled to an education until the age of 22. Whether a diploma is delayed to allow for skills to be attained, to take advantage of maturity, or to take advantage of vocational training, there are multiple ways to slow that train down if it's something that could help the situation. Schools aren't going to want to talk about that until closer to the end of high school, but you can put the idea in your back pocket as a way to take the pressure off.

We know a family that successfully had their son delay graduation because the vocational field he was going into turned out to not be a good fit for his people skills. He's doing another program in order to give him a better chance of having marketable skills at graduation.

All IEP planning after a certain age (14?) is supposed to include transition planning, and this could be a sign that more specialized attention needs to be given to this young man's transition planning.

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8 hours ago, gardenmom5 said:

we tried.  his ND was shocked at how low his lithium levels were "in the subbasement".  he responded poorly...

Was that blood or hair or for the testing? And what was the response? I think I've read about one of the Bs as part of the picture, but I thought it was the other direction, with lithium making the bs work better or something. 

I'm asking because I'm in the market for something more to help ds. We were about 80% of the way there and then he had a growth spurt. :sad:

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