Help me with television control

[BlsdMama]

I'm going to put a lot of "I can'ts" around this problem because I want it to be long-working and realistic.  Truth is I can-ish.  But I won't because 9 kids and sanity.


I have a kid with a SERIOUS character problem.  It's ongoing and the kid is special needs.  One psychologist thinks he may have really been affected by a concussion when he was five. 

Regardless, it is what it is.

He is diagnosed severe to profound dyslexic and inattentive ADHD.  He is medicated.

He lacks serious impulse control and screen addiction.  It's why no one in my family has access to any of our tablets.  He will find them and the next thing ya know, they're in his room.  Now, I have parent controls on them, on the wi-fi, etc. so it's isn't what he's watching issue- it's that he will watch ANYTHING on a screen ANY TIME.  Anything that's on - he watches, for the most part. 

And tearing himself away, if it's interesting - he gets angry, sullen, snappy.

I NEED to curb the impulse.  Let's take today for instance.  Every half grown kid in my house knows to do schoolwork.  DH took DS (4yo) to an oral surgery this morning.  I took DD #3 to a follow up surgical appointment for her foot.  He wakes up, no one to regulate him, he turns on the tv.  (Our computers are password protected.)

DD #5 reminds him - Hey, it's Tuesday, no TV.  He proceeds to argue.  They call me because they know the argument would be never ending.  I punish.  One of his tackleboxes, with tackle, is headed to Goodwill.  It's extremely painful and I'm so far beyond livid it's insane.  This is something he KNOWS.  He knows how to get out of bed and NOT turn on a screen.

The screen is a constant source of fighting.  I'm being very reactive - he gets the pleasure of flipping it on and having a bit of time to watch before getting busted.  I want to be proactive.  DH *really* doesn't think we need to get rid of the television in the living room because of one person.  I agree somewhat.  I think in theory we shouldn't have to - no one else has an issue.  But this is beyond a tv problem to a serious character issue - worthy of getting rid of the tv.


So now what?

Is there a gadget?  Can you password protect your screen? In the past we have taken the cord.  However, it's a huge PITB and then I have to hook it back up, etc.

Suggestions?
 

[JIN MOUSA]

If he's watching things accessed through WiFi (like Roku, Apple TV, Firestick, smart TV, etc.), you should be able to setup your WiFi to only connect to the TV at specific times or when you authorize it from your WiFi software/app. 

No ideas on what to do for cable or antenna connections. 

[happi duck]

Rather than taking the cord:  can you put a lock through the prongs?  You could use an extension cord so that plugging in and out is more accessible.

[PeterPan]

Since taking away the tacklebox isn't changing the behavior, you need to stop doing that kind of punishment. It's clearly not working. 

It's possible you don't have the correct diagnoses on him. My ds is that way (extreme internal entropy, using screens to self-regulate) and he has ASD2. I'm just saying what if you stop assuming it's a character/volition problem and bring in some stronger tools meant for people who have more serious self-regulation problems?

Number one thing I don't see happening in the list you gave is EARNING screen time. He can have all the time he wants, but he has to EARN it. If anyone sees him on, oops he forgot to earn it. If he watches without earning it first, no biggee, now he does DOUBLE to earn it.

And earning needs to involve pairing, tomato staking, him doing things WITH someone, because right now he sounds really internally dysregulated. That's why he's waking up and going to the tv, because it's there and no one is intervening to offer to help him self-regulate. If you are in his room BEFORE HE GOES OUT and you start reading him a book, will he stay? I have to get my ds BEFORE he goes to anything else.

Also, think through the arguing thing. You seriously need some better strategies here. In our house what happens with that is people are afraid of the behaviors he'll have so they don't confront. That means arguing gets him what he wants. Your "punishment" based on cause/effect (he did something, he lost something) isn't clear enough that he's picking up the clue phone. So it's going to be more direct, more guided, higher support, more explicit. First/then, that type of thing. How old is he? 

I also don't buy the concussion thing. I've had two concussions. Have you taken him for cranial sacral? You're saying he has TBI and his cognitive processing is affected? Or you're saying he is dissociating and not connecting well to people from trauma? THAT I buy. I just went and got more cranial sacral yesterday, highly recommend. There definitely is this theory that trauma causes dissociation and disconnect. I would definitely take him for cranial sacral and see what they find, sure.

I think you could also stand to step up your tools. Some mindfulness, instruction on social thinking (group plan, etc., like in We Thinkers 1 & 2 from the SocialThinking.com site, etc.) would be FABULOUS. You could do interoception (Mahler) work with him. You need better tools, because calling it a character problem and punishing isn't getting you there. He probably has a mix of social thinking deficits (common in ADHD) and a need for help with self-regulation. That's going to take explicit instruction and higher support.

For earning time, what do you want him to do? He could earn by doing school work with you. He could earn by reading silently or aloud to you. You want positive, self-rewarding things he can do to earn time. He could earn time by playing games with you. (Play 2 rounds of Uno, then you may have 20 minutes of Tom & Jerry.) The other thing to nip that time is to use streaming or subscriptions so you can cut out the commercials. That way you know how long it's going to be and don't feel badly about time lost. I would UP the screen time but control it better. Work with me on this worksheet, another 3 minute episode of Tom & Jerry. Now another worksheet, now another episode. That way you're getting back in control. If you want mornings in control, go in before he gets out of bed, as he's clearly not yet ready to regulate himself and be on the plan without someone co-regulating and getting him on track.

[moonflower]

Don't give away the tacklebox.  He is addicted and he is a child.  If your husband were an alcoholic, you wouldn't keep a bottle of wine on the table at dinner and a case of beer in the fridge and then sell his nice stuff when he can't help it anymore and drinks it.

If I were you, I'd get rid of electronics.  No one needs them.  Many generations of kids grew up fine, and adults entertained themselves fine, without TV, much less tablets.  Just don't own them.

[prairiewindmomma]

1. If you have a smart tv, it may have a parental control lock feature. I *think * both Samsung and LG have these features.

2. You can go old school with a diary lock through the prong, but odds are he's resourceful.

3. Depending on your setup, your power supply cord may be pluggable/unpluggable, and you can remove the power supply.

Fundamentally, though, I think you have a kid who is needing a lot more support to stay on task and regulate himself.  You've got a lot of chaos just with having a large family, and add to that everything else going down in your house, and I get how frustrating it is that this is a big issue that is taking time and energy that you guys don't really have.

I have a hard time labelling the kid as having a character problem if the fundamental root is that he has organic brain issues (which ADHD-I is, let alone if he has other stuff on top of that). The problem behaviors are what's getting the attention, but those behaviors are an expression of the big picture problem....which is that his prefrontal cortex hasn't caught up with his body size. Big kid body, toddler functioning brain. I'd stop with focusing on punishing and refocus onto rewarding good behavior.  

 

[Bluegoat]

I totally understand why you'd not want to give up screens totally, just for one person.  I'd be pissed off, in a personal way, to have to do that too.

That being said, that is what I would do in your situation. Because 1) I think it would be less unpleasant than you imagine - it might actually have good results overall. and 2) Just totally eliminating the source of the problem would be a huge relief. and 3) It might well be better for his development.

I think what you could think about is how you go about eliminating them.  You could just totally get rid of them, or you could find a place to keep them for a period of time, three or six months say, and then re-evaluate.  

You could also consider keeping one but in a very inaccessible way - I had friends whose parents kept their tv on a cart in the closet.  Getting it out meant a fair bit of planning. They only watched tv occasionally as a result. ( And you could of course lock the closet/room, whatever.)  The other possibility might be for you or your dh to use a personal computer for watching tv, or to let certain kids watch, but make sure it's otherwise under control.

 

[PeterPan]

And btw, I apologize for making it sound glib, when I know you have health problems, etc. 

To me, if you go in and try to read to him and he STILL walks out the door and turns on the tv, that's really telling, kwim? That's why I'm saying assign someone and step up that level of support and who he is tomato staked to and see what happens. Even then, I wouldn't automatically assume it's "disobedience" because there's still so much with things like group plan, realizing there's a plan, having been taught the plan to automaticity so he can DO the plan independently, etc. If my ds is off the plan, is it disobedience or that I didn't make the plan clear and provide enough structures and supports till he's working the plan? If there's no plan (here is your list, this is what you do, I've walked you through it so I KNOW you can do it independently, and this is the check-in point where I remind you to get back on the plan), then is it disobedience if he's not on the plan or a lack of adequate support?

Some kids need a SHOCKING amount of support and structure to be on the plan. You won't know what could be till you increase the structure THAT HIGH. Someone is with him from the moment he wakes up, providing support, teaching him to work the plan, fading that support as he begins to be ready to do it independently. And I would end the plan (1 hour, whatever) with tv, since clearly screen time is a motivator for him. Then, when he can work that plan (for the 1st hour when he wakes up, where he ends with his motivator), then I would begin the next plan, clear structure, again ending with a motivator (probably screen time).

Although there is the discussion that screens are this and that for brain chemistry, there's also the theory that some people are drawn to them because of extremely strong visual perception or visual spatial skills. You might try upping something highly visual-spatial into his day and see if he responds to it. CAD drawing, pajaggle, building legos or knex (you can download instructions for free for new projects or STEM challenges), etc. To get someone to transfer from one thing that is self-stimulatory (self-rewarding, making them feel good) to another, you have to match the thing with intensity.

Edited December 18, 2018 by PeterPan

[SKL]

I was going to suggest the cord, but it seems that is out.

What about giving him a set # hours of screen time per week, and if he uses it at the wrong times he can't watch it at other times?  And if he throws a fit, he gets a physical job somewhere away from the TV to enforce it?  Or he can go to a movie at the theater only if he keeps his TV viewing time below a certain amount.

I missed his age.  If he is well into his teens, I would probably give him more leeway even though you know this isn't really good for him.  One thing I've done with my kids: if they watch at certain times when I'd rather they studied, it has to be "educational DVDs."  Some variations - maybe he could watch shows in a language he is learning or movies based off classic literature or some other variation of "not so bad" viewing.

I like the idea of no TV at all, but I agree it is not fair or realistic to ask the whole family to make that sacrifice because of one person.

[scholastica]

We lock the remotes and any other electronics that people have a hard time regulating in a lock box during times we don’t want them in use. We also set the cable box to a nothing channel before we do it. Even if tv gets turned on, there’s no way to change from the blank screen.

[Mergath]

You said twice it's a character issue, but it's not. He has special needs. From what you said, he can't self-regulate screen time. Expecting him to, and then punishing him when he doesn't, is cruel and you're just setting him up to fail. It can be hard to see that when you're within the situation, I know.

Like someone else mentioned, you can't take someone with an addiction, put the thing in front of them, and then get mad when they give in. My dh is forty-eight years old and he's a recovering alcoholic. If I put a bottle of booze on the counter and he drinks some, it's just as much my fault as it is his because I'm demanding something of him he isn't capable of giving.

Don't give away the tacklebox. Giving away your son's things isn't going to magically give him the power to self-regulate his addiction. Either keep him with you at all times so he doesn't have the opportunity to access screens when he shouldn't, get rid of the screens, or try to let it go and pick different battles. It sucks, but those are basically your options. You can mess around with passwords and such, but it's going to end up being a battle of attrition.

Edited December 18, 2018 by Mergath

[Pen]

Don’t give away his tackle box. You want to encourage non-screen activities not be punitive and take away something like that.  I would say, “I am sorry I overreacted and made a mistake.”

Disclosure: We don’t have a TV, so the idea of being without one doesn’t seem like a big deal to me.  

I would suggest at least locking the tv in a closet or better, have it go to grandparents or otherwise be inaccessible for a year (or more) and have family games, read alouds, outdoor play, and so forth instead.  Reevaluate at end of year.  

If no one has any screen addiction other than the one child, no tv for a year should not be a problem for the rest of the family. If it feels like deprivation to others, there may be more screen addiction than you realize in family members other than just the one boy.  

 In my opinion, Adult  parents should shoulder the job, and self control, of not having any unnecessary addictive substance accessible to and a frequent temptation and reminder of its existence in the environment of a child who has a problem with it.  

 

 

 

[moonflower]

We also don't own a TV, or any small electronics at all.  We have two computers; DH and I work from home and use them off and on all day.  The kids get a turn on them occasionally when we're not using them; total kid electronics time is probably 2 hours a day, split between or shared among 6 kids.  Often it is not that much, if we're super busy or if the weather is nice.  

When we did have tablets, for a short time, I realized one day that I couldn't find any of the kids anywhere.  I went looking for them - every single one of them was sitting in dark closet using a tablet.  I gave them all away that day and they have not had them since.  They're fine.

[Tanaqui]

If your son was allergic to peanuts, severely allergic, and your husband didn't want to stop buying peanut butter because nobody else had a problem, what would you say? If somebody in your household was addicted to alcohol, and your husband was dragging his feet, complaining that it was unfair to not allow anybody to drink alcohol in the house or even bring it onto the property because, after all, nobody else had a problem, what would you say?

If there is a "character issue" here, I'm not sure it's your son who is the problem.

Your son has a disability that makes it hard or impossible to regulate screen time. This isn't his fault. Don't you think he'd rather be able to watch just a little TV and then turn it off and go do something else, without Mom and Dad getting mad at him? Don't you think he'd rather not be the reason that you have to be the tablet police every day, making sure all the devices are locked up? Don't you think he'd rather get to keep all his stuff and not fight with his sister?

But he can't do that. If he could do that, he would. He can't. He needs your help. He should not have been left home with access to the television and nobody supervising but an older sibling. That's on you. And ultimately, however annoying it would be to remove the TV altogether, it would solve these fights and problems.

[BlsdMama]

3 hours ago, PeterPan said:

Since taking away the tacklebox isn't changing the behavior, you need to stop doing that kind of punishment. It's clearly not working. 

It's possible you don't have the correct diagnoses on him. My ds is that way (extreme internal entropy, using screens to self-regulate) and he has ASD2. I'm just saying what if you stop assuming it's a character/volition problem and bring in some stronger tools meant for people who have more serious self-regulation problems?

Number one thing I don't see happening in the list you gave is EARNING screen time. He can have all the time he wants, but he has to EARN it. If anyone sees him on, oops he forgot to earn it. If he watches without earning it first, no biggee, now he does DOUBLE to earn it.

And earning needs to involve pairing, tomato staking, him doing things WITH someone, because right now he sounds really internally dysregulated. That's why he's waking up and going to the tv, because it's there and no one is intervening to offer to help him self-regulate. If you are in his room BEFORE HE GOES OUT and you start reading him a book, will he stay? I have to get my ds BEFORE he goes to anything else.

Also, think through the arguing thing. You seriously need some better strategies here. In our house what happens with that is people are afraid of the behaviors he'll have so they don't confront. That means arguing gets him what he wants. Your "punishment" based on cause/effect (he did something, he lost something) isn't clear enough that he's picking up the clue phone. So it's going to be more direct, more guided, higher support, more explicit. First/then, that type of thing. How old is he? 

I also don't buy the concussion thing. I've had two concussions. Have you taken him for cranial sacral? You're saying he has TBI and his cognitive processing is affected? Or you're saying he is dissociating and not connecting well to people from trauma? THAT I buy. I just went and got more cranial sacral yesterday, highly recommend. There definitely is this theory that trauma causes dissociation and disconnect. I would definitely take him for cranial sacral and see what they find, sure.

I think you could also stand to step up your tools. Some mindfulness, instruction on social thinking (group plan, etc., like in We Thinkers 1 & 2 from the SocialThinking.com site, etc.) would be FABULOUS. You could do interoception (Mahler) work with him. You need better tools, because calling it a character problem and punishing isn't getting you there. He probably has a mix of social thinking deficits (common in ADHD) and a need for help with self-regulation. That's going to take explicit instruction and higher support.

For earning time, what do you want him to do? He could earn by doing school work with you. He could earn by reading silently or aloud to you. You want positive, self-rewarding things he can do to earn time. He could earn time by playing games with you. (Play 2 rounds of Uno, then you may have 20 minutes of Tom & Jerry.) The other thing to nip that time is to use streaming or subscriptions so you can cut out the commercials. That way you know how long it's going to be and don't feel badly about time lost. I would UP the screen time but control it better. Work with me on this worksheet, another 3 minute episode of Tom & Jerry. Now another worksheet, now another episode. That way you're getting back in control. If you want mornings in control, go in before he gets out of bed, as he's clearly not yet ready to regulate himself and be on the plan without someone co-regulating and getting him on track.

I think this is all well and good but for a mom who spent about as much time in (or driving to) the hospital than actually parenting this entire year, I'm doing what I can.

I'm being realistic.  I'm barely keeping this together, really just surviving on foundation I've spent 20 years building up and creating this particular year, and this one particular child can't follow rules for cr@p.

As far as tools go - I'm proactive parenting to the best of my abilities and I'm wiped - totally and completely at this point.  What he needs is a 24/7 babysitter and at almost 14, I'm so freaking over this it's not even funny.  I have four older than him who are/were essentially adults by 16 - the parenting techniques I utilize do work on a typical child, thus I've never had to result on dependence on punishment.  Unfortunately, not a damn thing I do otherwise for this kid works and at this point, I am utilizing punishments. Do I believe he has some kind of severe issue? Yup and we are teeter on the brink of medical ruin at this point.  He's been eval'd by three psychiatrists including a neuropsych, learning disorder folks, three different counselors, oh, and for a while met regularly with an anger/behavior management mentor/counselor.  I spend more time on him with school than the other seven combined and there is only so much I can do before I am throwing the others under the bus for the one that sucks up every ounce of my energy and sanity.  You can see I'm really teetering here.  I'd love to toss his butt in school, which we've discussed many, many, many times over the past 5-6 years, but we have zero doubt he'd choose the dead wrong friends and do the dead wrong things.  Thus, here I am, homeschooling.  

So, you see, the problem is that maintaining control over him requires that I be here 24/7 and on top of him at all time

It cannot, in any way, happen at this point in our lives but you may not be aware of the medical storm that hit us this year, so I take him lots of places with me.  He really seemed to enjoy the six hour infusions when I was doing IVIG.   I need him to be self regulating.  He obviously cannot or will not be and so we take him almost everywhere with us or take him to Grandpa's when I have to run somewhere - like Mayo on Thursday.  However, there are those moments, like this morning when I was going to a post-surge appointment with Liz, that I fully expected to get through a 1.5 hours without a phone call saying, "Hey, he refuses to shut off the tv and just start his math."  Um, hmm.  Really thought we'd be able to slide through that one.

So, yeah, totally counting on locking it down and taking one fight out of this equation.  I need, desperately, to minimize the confrontation.  Do I think it will solve the issues?  Nope.  But it will this one.

[BlsdMama]

1 minute ago, Tanaqui said:

 

But he can't do that. If he could do that, he would. He can't. He needs your help. He should not have been left home with access to the television and nobody supervising but an older sibling. That's on you.

Thanks for that.  Super. 

[moonflower]

It sucks that this is the case, it does.  But the fact that his disability is mental instead of physical doesn't make it not a disability.   He's not a typical child.  Trying to get a blind child to just mow the damned lawn already without running over all the flowers every time wouldn't work as well as it does with your seeing children, either.

I don't think that having ADHD necessarily means he'll choose the wrong friends in high school.  What makes you sure he'd do wrong things?  Do you mean that he'd start taking drugs or something?

[forty-two]

With everything you have on your plate, I think I'd just get rid of the TV.  ITU not being able to be on top of him every minute, so might as well get rid of the need to do so.  Can't be constantly fighting over watching the TV if it's not there to be watched. 

[HomeAgain]

It might look funny, but would a locking armoire be something you could put in your house?  I think I would put the tv in something like that before getting rid of it.

[BlsdMama]

1 hour ago, Mergath said:

You said twice it's a character issue, but it's not. He has special needs. From what you said, he can't self-regulate screen time. Expecting him to, and then punishing him when he doesn't, is cruel and you're just setting him up to fail. It can be hard to see that when you're within the situation, I know.

Like someone else mentioned, you can't take someone with an addiction, put the thing in front of them, and then get mad when they give in. My dh is forty-eight years old and he's a recovering alcoholic. If I put a bottle of booze on the counter and he drinks some, it's just as much my fault as it is his because I'm demanding something of him he isn't capable of giving.

Don't give away the tacklebox. Giving away your son's things isn't going to magically give him the power to self-regulate his addiction. Either keep him with you at all times so he doesn't have the opportunity to access screens when he shouldn't, get rid of the screens, or try to let it go and pick different battles. It sucks, but those are basically your options. You can mess around with passwords and such, but it's going to end up being a battle of attrition.

In full disclosure, he has five.  This one was least important.

So, I'd like to expand a little.  Yes, he has special needs.  However...  he is a fully functioning, normal IQ child.  He has ADHD - inattentive.  He was medicated this AM.

Here's the kicker....  And this is what I keep going back to - 

He only chooses to turn on the tv when my back is turned and he thinks he won't get caught.  Which means - he CAN exercise self-control, he just opts not to in some scenarios.

Yes, my instinct is to get rid of the tv in the living room.  Now, there's one down the basement.  Would he go down? Nope, it has a hard and fast rule.  The rule in the living room is subjective (has no set time frame) so as I examine this - either the rule would have to be concrete (which is where I think my issue is) OR needs to be locked down.

I don't see it being concrete in our house.  We do allow tv sometimes in the AM (like on Saturdays) and sometimes early afternoon or sometimes not until evening.

Yes, I'd love to get rid of the TV entirely.  That said, DH would like to keep it.  I can understand where he's coming from - he is the furthest thing from a screen addict so he'd like DS to see it as a tool - something you use for recreation but not something you have to have.  He feels its hard to practice self control if you just remove it entirely.

Let's think about (or discuss) because the truth is while it's not smart for an alcoholic to keep alcohol in the house, it does take self control for an adult to not go buy it.

Mergath - I don't think I'm setting him up to fail.  There is a very clear rule and he can follow it when he chooses to.  His sisters are there to keep him accountable (something we all need.)  When called on it, he got angry - that is a character flaw.  Absolutely.  We all need accountability - every one of us.  Now, there are extenuating circumstances that need to be taken into consideration, absolutely. 

But, and here's the thing, if we were talking about an 8yo, I'd say the temptation is too great.  But we're talking about a kid who is days away from being 14.  While he is SN, I think we all may have a very different picture in our head of what that means.  This is a kid who is 100% self care, almost grade level, and could "pass" as typical if a little immature and impulsive.  If I gave him a long range "to do" list in order to do something else - for example, "I'm going to run a few errands and when I get back, I need A, B, C, D, and E to happen before you can go fishing," it would all be done.  No written list required.  However, if there is nothing "in it" for him, he's not motivated.

Truth is this kid has four years to adulthood - we have got to sort some of this out.  A few things are very motivating for him - working outside, spending time with Grandpa, fishing, and Trail Life.  But we have to work towards self regulating and while my other children moved towards self regulating, he only does so when there is something in it for him.


And finally - I'm asking that you please be a little bit gentle and realize that while we've been very "on it" in the parenting arena for 22 years, our lives are now hard at a level I'm pretty sure few have ever experienced and it's only going to get worse.  I totally get that I'm not 100%.  Honestly? I'm not even sure I can be or want to be.  I have a few things I'd like to do for me and I get that they aren't going to happen either.  I'm feeling like I'm failing in every direction and that's a pretty new thing for me and I'm not loving it.  And at this point I'm tired of the effort a lot of things take - you know like walking, getting out of bed....  I'd really just like to stay in bed, take another class to check off a bucket list item, and not function for a whole month and no more appointments.  Not one - not for anyone.    And I totally get that that is at a level of selfishness beyond comprehension and don't like myself much for it.  FWIW.

[PeterPan]

2 minutes ago, BlsdMama said:

at almost 14,

Honestly, you're describing spectrum. Everything you're describing is spectrum. I don't know why your psychs aren't diagnosing it, but it's what you're describing.

And that's why I was apologizing for making it sound glib and easy, cuz I know you're maxed out. But the answers you've gotten haven't worked so I was suggesting a different answer. Say it is spectrum (like just say), what would you do? You'd get a diagnosis, you'd enroll him in an autism school or a ps that has adequate supports, yes. You'd see if your insurance will fund ABA or any interventions. They might or might not do ABA at this point, but they might call it ABA for insurance purposes and be doing a lot of really foundational stuff.

I'm sorry it's hard. 

5 minutes ago, BlsdMama said:

not a damn thing I do otherwise for this kid works

6 minutes ago, BlsdMama said:

He really seemed to enjoy the six hour infusions when I was doing IVIG

6 minutes ago, BlsdMama said:

What he needs is a 24/7 babysitter

7 minutes ago, BlsdMama said:

for a while met regularly with an anger/behavior management mentor/counselor.

Honestly, you're going right through DSM criteria here. You have stims, delay, affective response, emotional regulation. I have no clue why they haven't gotten this diagnosed. What ARE they saying is causing all this? Developmental delay, lack of cause effect, severe EF deficits, needing a co-regulator, perseverating...  

7 minutes ago, BlsdMama said:

He's been eval'd by three psychiatrists including a neuropsych, learning disorder folks, three different counselors

We had a neuropsych for whom even profanity wasn't nice enough. Those people are as good as their forms, and the forms are often crap. Who is filling them out? Who is seeing these behaviors enough? And were they recent? If you go get a psych who specializes in autism and developmental disorders and sit down and hash it out, they can probably sort it out. But the person who does SLDs often ISN'T the person who is the autism expert. It's why you get idiotic mess like what happened to us, where I'm like why does my ds fly like a pterodactyl and flap his arms? Neuropsych: because he's gifted! Why does my ds quote paragraphs from books? Neuropsych: because he's gifted! On and on. That (remove not nice words) $$$$ neuropsych who is the stinking AUTHOR of some well-known tools delayed our diagnoses several years. My ds is now labeled ASD2. Being a neuropsych means NOTHING. That jerk used an old edition GARS on us, nothing else, and knew NOTHING. Absolute positive idiot.

6 minutes ago, BlsdMama said:

I'm so freaking over this it's not even funny

I'll bet you are, sigh.

7 minutes ago, BlsdMama said:

Do I think it will solve the issues?

We hit a really low point with our ds this past year and were either going to have to send him out or figure out SOMETHING to make it change. So I do get that you're very desperate and feeling low on options. If however you walked down the autism path, what might change? Could you get coverage? Would your insurance cover a placement? Could you get him covered by your state children's health insurance program and get ABA and in-home services for him? Is there an autism school or a ps that has a safe placement for him? They could probably get this basic stuff under control. I assume you've remediated his SLDs, and some ps are actually doing a really good job on things like structure, interventions for emotional regulation, etc. I wouldn't assume it would be a bad placement. It might be. I mean I live in an area where 70% of the kids live below the poverty level and they want to put my ds in an ED classroom per his IEP. Obviously I'm not keen on that. But there is good intervention being done in the schools right now for emotional stuff. 

7 minutes ago, BlsdMama said:

we are teeter on the brink of medical ruin at this point.

If your insurance is maxed out, will the state children's health insurance cover anything? How are his adaptive living skills? Things like can he make a snack, can he place a call in an emergency, can he remind himself to brush his teeth, etc.? In our state you qualify for additional funding and services with the county by hitting 3 of 6 areas. So a developmental delay is 1, his SLDs are another, and then adaptive living would be a 3rd. Given the extremity of what you're describing, it's *possible* he would qualify. I at least wouldn't assume not, if that makes sense.

I'm sorry it's hard. We ran genetics on my ds and got the anger and extreme emotions more under control that way, with supplements informed by his genetics. That bipolar, schizophrenia, mood disorder, etc. is linked to high methyls, vitamin D deficits, methylation cycle defects, etc. We put my ds on vit. D, niacin, and 5HTP. It's very hard to teach or counsel *through* that level of mood disorder. Is your ds on meds? That's where we were. Now that my ds' body is more stable, now he can go to counseling and receive the instruction. 

I would not be above sending him out, no. School would be fine or a residential placement. I would want an answer on the autism question. But I've had to learn that it doesn't matter so much who is showing the love and doing the work as that it gets done. But like I said, I'm really sorry it's hard. Even being divided between my two kids and my own health needs was hard, let alone your more compounded situation.

 

[BlsdMama]

10 minutes ago, moonflower said:

It sucks that this is the case, it does.  But the fact that his disability is mental instead of physical doesn't make it not a disability.   He's not a typical child.  Trying to get a blind child to just mow the damned lawn already without running over all the flowers every time wouldn't work as well as it does with your seeing children, either.

I don't think that having ADHD necessarily means he'll choose the wrong friends in high school.  What makes you sure he'd do wrong things?  Do you mean that he'd start taking drugs or something?

Absolutely.  That, looking at things he ought not, making every SINGLE bad choice in an attempt to impress people - all of it.

He definitely has a disability - no doubt about it.  I'm a huge advocate of addressing the needs.  However, we see a psychiatrist every three months to re-evaluate any ongoing needs.  It's a constant effort, not just an eval and done.  And we've had different evals done (see above) to make sure we're on the right track.

No child is a typical child.  Not one.  So we're trying to balance out what works with him and it's not much.  Fishing every single week - and I'm not kidding, that works to keep him motivated.  I wish I was kidding, but I'm not.  If he has a short term carrot dangled in front of him for a quick pay-off and it's something heavily beneficial to him, then the kid can conquer the world.  (Or, in his case, chop 2/3 of a huge ash tree or break up concrete into rubble.)  He's done things that I don't expect of an adult man.  Conversely, if he is not motivated, we have the ongoing argument of why can't he watch tv......

I'm just boggled.  And I can't get a grasp on his age appropriate behaviours in one area and then a total lack thereof - unless something is in it for him.  And that is certainly a character flaw. 😞

[BlsdMama]

2 minutes ago, PeterPan said:

Honestly, you're describing spectrum. Everything you're describing is spectrum. I don't know why your psychs aren't diagnosing it, but it's what you're describing.

And that's why I was apologizing for making it sound glib and easy, cuz I know you're maxed out. But the answers you've gotten haven't worked so I was suggesting a different answer. Say it is spectrum (like just say), what would you do? You'd get a diagnosis, you'd enroll him in an autism school or a ps that has adequate supports, yes. You'd see if your insurance will fund ABA or any interventions. They might or might not do ABA at this point, but they might call it ABA for insurance purposes and be doing a lot of really foundational stuff.

I'm sorry it's hard. 

Honestly, you're going right through DSM criteria here. You have stims, delay, affective response, emotional regulation. I have no clue why they haven't gotten this diagnosed. What ARE they saying is causing all this? Developmental delay, lack of cause effect, severe EF deficits, needing a co-regulator, perseverating...  

We had a neuropsych for whom even profanity wasn't nice enough. Those people are as good as their forms, and the forms are often crap. Who is filling them out? Who is seeing these behaviors enough? And were they recent? If you go get a psych who specializes in autism and developmental disorders and sit down and hash it out, they can probably sort it out. But the person who does SLDs often ISN'T the person who is the autism expert. It's why you get idiotic mess like what happened to us, where I'm like why does my ds fly like a pterodactyl and flap his arms? Neuropsych: because he's gifted! Why does my ds quote paragraphs from books? Neuropsych: because he's gifted! On and on. That (remove not nice words) $$$$ neuropsych who is the stinking AUTHOR of some well-known tools delayed our diagnoses several years. My ds is now labeled ASD2. Being a neuropsych means NOTHING. That jerk used an old edition GARS on us, nothing else, and knew NOTHING. Absolute positive idiot.

I'll bet you are, sigh.

We hit a really low point with our ds this past year and were either going to have to send him out or figure out SOMETHING to make it change. So I do get that you're very desperate and feeling low on options. If however you walked down the autism path, what might change? Could you get coverage? Would your insurance cover a placement? Could you get him covered by your state children's health insurance program and get ABA and in-home services for him? Is there an autism school or a ps that has a safe placement for him? They could probably get this basic stuff under control. I assume you've remediated his SLDs, and some ps are actually doing a really good job on things like structure, interventions for emotional regulation, etc. I wouldn't assume it would be a bad placement. It might be. I mean I live in an area where 70% of the kids live below the poverty level and they want to put my ds in an ED classroom per his IEP. Obviously I'm not keen on that. But there is good intervention being done in the schools right now for emotional stuff. 

If your insurance is maxed out, will the state children's health insurance cover anything? How are his adaptive living skills? Things like can he make a snack, can he place a call in an emergency, can he remind himself to brush his teeth, etc.? In our state you qualify for additional funding and services with the county by hitting 3 of 6 areas. So a developmental delay is 1, his SLDs are another, and then adaptive living would be a 3rd. Given the extremity of what you're describing, it's *possible* he would qualify. I at least wouldn't assume not, if that makes sense.

I'm sorry it's hard. We ran genetics on my ds and got the anger and extreme emotions more under control that way, with supplements informed by his genetics. That bipolar, schizophrenia, mood disorder, etc. is linked to high methyls, vitamin D deficits, methylation cycle defects, etc. We put my ds on vit. D, niacin, and 5HTP. It's very hard to teach or counsel *through* that level of mood disorder. Is your ds on meds? That's where we were. Now that my ds' body is more stable, now he can go to counseling and receive the instruction. 

I would not be above sending him out, no. School would be fine or a residential placement. I would want an answer on the autism question. But I've had to learn that it doesn't matter so much who is showing the love and doing the work as that it gets done. But like I said, I'm really sorry it's hard. Even being divided between my two kids and my own health needs was hard, let alone your more compounded situation.

 

I hear what you're saying - but the kid is socially adept.  We have a daughter that is most likely HFASD.  She is not socially adept - needs cues taught, etc. He is socially adept and capable of understanding precisely how to carry on a conversation, correct responses, etc.

He needs constant work on EF skills.  That's pretty typical of ADHD kiddos.  Absolutely no hyperactivity though - just low motivation and impulsivity.  I liked our neuropsych - she was in Portland.  Here in Iowa, we've seen two psychs.  I like the second one at the University the best but I don't love him.  I just don't know.  The counselor was good - no real education but his ability to relate to him on his level was solid.  He's the one who essentially said that DS can't relate when his emotions are up - his ability to reason shuts down . And he's right.

[Junie]

(((BlsdMama)))

What I would do: Keep the TV.  I would figure out a punishment and spell it out for him.  *If you watch TV when you are supposed to do xyz, then you will have to do an extra chore before you can go fishing.*

I would also give the kids the day off school if you are not going to be home because of an appointment.  This way the other kids don't have to police him.  And I understand that it might be a lot of days.  So be it.  The school work is not as important as the relationships and the character building.

One thing that you maybe have to consider is how your illness is affecting him and your other children.  They are likely just as scared as you are -- if not more so.

[SKL]

I'm nowhere near your overall situation, but I hear you on the motivation / "character flaw" issue.  One of mine is really difficult to figure out.  The motivation thing.  If she wants it or is interested in it, she's quite high functioning.  If it isn't her thing, the functioning level goes down - can't remember stuff, doesn't have the stamina to read stuff, cops an attitude ....  While I would love it if there were some kind of mama switch I could flip to fix this, I haven't found one yet.  Sometimes it does feel like a character flaw.  Other times, I really wonder.

[PeterPan]

I think if he *is* on the spectrum and you remove the tv you're possibly setting up a very dangerous situation. Right now it appears he is using the tv to self-regulate. He's bent toward anger, mood disorder, emotional dysregulation, and you're not offering to REPLACE the tv with something else to help him stabilize. You're just offering to take away the tv and leave him hanging. So in that situation, he's going to have to find ANOTHER thing to help him regulate, since that's what the tv was doing, and it's likely to be MUCH more mal-adaptive. He's also likely to have some behaviors of frustration.

Flipside, what if we yanked your coffee? You drink coffee? I don't, lol. But I think if you drink coffee and somebody yanks it, you might have headaches from the withdrawal and be very frustrated at the hole it leaves in your routines, in how you're used to running things. IF he's on the spectrum, this is all going to be magnified dramatically. Personally, I think it sounds horribly dangerous and unbeneficial.

If you remove the tv, will he then go do what you want? That's your big answer. If removing the tv is like ok now he's bored and he'll comply, then fine remove the tv. But it doesn't sound like that's how he's functioning. So you're going to remove what he's using to stabilize and regulate and make him even MORE de-stabilized.

Instead try *replacing*. The best way to get someone off a less-preferred stim and onto another is replacement. So you set a timer and you say hey let's do tv 15 minutes and then we're going to play a round of Uno! You can set timers, replace it with something of equal intensity (stim value, sensory input), replace it with time with a person who is offering to co-regulate.

It's also a win to *decrease* the stim. You don't have to be cutting out tv entirely to be winning. Getting some compliance around the tv and decreasing it slightly is still moving in the right direction.

Is there anyone in his life he is bonded with? Someone who enjoys him who can spend time with him 1-2 hours a day a few days a week? ANYTHING they would do would be useful. They can play cards, go shopping, anything. It will be time he's not on the tv and time he is working on being with others.

[moonflower]

I just want to be really clear on the character flaw - you are saying that he has ADHD and maybe some other issues (TBI?) that are maybe not that well controlled, and the character flaw is that he is not as responsive to long-term reward as neurotypical kids, or that he requires more immediate and pertinent consequences and rewards and more structural support to do things that other kids can do without those supports?

Because I have these same character flaws.  I do see them as character flaws, but I think that's not really the current thinking, and certainly many people on these boards were pretty critical when I first wondered whether what I had always seen as laziness might actually be ADD.  

I own and operate a small business that provides 100% of our (top quartile in the nation) income.  I have 7 kids, 4 at home during the day and 3 in school.  But I require constant small rewards and massive structural support to stay on task, do the right thing, put things up where they belong, clean up after myself, replace the toilet paper when it's out, finish my work, do the boring parts of the job, fill out paperwork on time, take out the trash, not waste 10 hours researching fabric for a quilt I'll never make, etc.

 

[PeterPan]

7 minutes ago, BlsdMama said:

Fishing every single week - and I'm not kidding, that works to keep him motivated. 

This is awesome!! So this is sort of a secondary interest, not his primary? That would be really great to use with the PowerCards technique. https://www.erinoakkids.ca/ErinoakKids/media/EOK_Documents/Autism_Resources/Power-Cards.pdf  Here's a pdf, but there's a brief book. You could use his fishing interest and connect it to things you need to have happen by making cards with a fishing-themed picture and the steps. So then you just say here's your salmon fishing card, get this done and then watch tv. You need to teach him to do the steps independently yes. It sounds hokey, but actually powercards are an evidence-based practice, merging the person's special interests and the goals of the person working with them. 

[Mergath]

With everything you have going on, is there a reason you can't just let him have more screen time? It isn't ideal, but I grew up having basically unlimited tv and computer time and I turned out okay. I read about a hundred books a year on average, so it didn't turn me into an anti-intellectual screen junkie. 😉 If it is causing this much grief and stress, it's okay to choose not to fight this particular battle.

[moonflower]

I'm going to shut up and let Peterpan talk.

I will say, though, that I am highly motivated to do things I enjoy or to get rewards I like, especially immediate ones, and it ups whatever chemical in my brain that allows me to stay on task and focus and comply with what I know is the right thing to do.  Without that chemical boost I'm not as responsible.

[moonflower]

I also watched about a hundred hours a day of TV as a kid and suffered no long term effects.  I don't even own a TV now!

[PeterPan]

5 minutes ago, Junie said:

I would figure out a punishment and spell it out for him.  *If you watch TV when you are supposed to do xyz, then you will have to do an extra chore before you can go fishing.*

I would just like to make an observation about the language here. That's totally appropriate, normal, typical language. However if this dc has developmental delays, using an if/then construction might actually be beyond what he is completely understanding. And I know people are like oh no I know my kid understands! Well do language testing then. Psychiatrists don't do that. It's detailed stuff an SLP does, looking at syntax. We ran the SPELT (an expressive language test) on my ds and he BOMBED it even though he seemed to have tons of language!

A more evidence-based practice for someone with developmental delays would be:

-first/then---First do this math page, then watch tv.

-"the way to A" --http://occupationaltherapychildren.com.au/resource-time-the-way-to-a/  Here's a brief summary. It's a picture book for a concept, and once you get the concept you don't need the book. " I need you to do your math. Path/option A, you do the math and then you watch tv and we are all happy and we have a great afternoon and daddy is happy and we order pizza. Path/option B, you dawdle doing your math and you get no tv and mommy is exhausted from asking you 20 times and daddy comes home and sees that and is grouchy and then everyone will be in too bad and no one will want pizza." It doesn't have to be that fancy, but the idea is you're actually EXPLAINING to them the social consequences of their choice and what their options are and how each would work out. And it's NOT saying "if" because that's a more complex syntactical structure. Option A, you do this a certain way and we're happy and we go to the park because we're in such a good mood. Option B, you take your time and dawdle and I'm too tired to do this fun thing together and you'll still have to do it when daddy comes home. He sees the consequences of choices that way and might be able to choose a better outcome. 

[PeterPan]

7 minutes ago, Mergath said:

With everything you have going on, is there a reason you can't just let him have more screen time?

Absolutely! And maybe even make a screen time diversification list and tell him he's doing you a FAVOR watching more tv and reward him for it! Fastest way to get him to stop is to make it something you want him to do, lol. You could have 7 categories of things he could watch on a list and if he watches at least 3 and can give you a sentence about them for each he gets xyz motivator (fishing lure, whatever) when you get home. 

-news

-politics

-science

-history

-science fiction

-cartoon

-how to shows

-something based on a book

etc

So you just got narration and summarizing, got compliance, got him thinking in categories... 

See that's the thing with compliance. Sometimes you take the thing he's already about to do and you turn it into a task you've assigned.

[prairiewindmomma]

1 minute ago, happysmileylady said:

What about something low tech?

Would it be possible to drap a blanket or something over the tv?  Maybe some sort of drawstring bag that you can lock or something?

Yeah, I've got a 7th grader SN kid who is highly motivated by screens and, yeah, no.

We have similar issues at our house, and while my medical is scaled back in degree compared to yours, we have way more going on than the average homeschooling family.  What strikes me about your above post is the level of panic you're feeling about how a kid should be some place developmentally that he's not, and your worries about his adult future.  I get that. I have similar fears at my house.  I think you have to meet your kid where he's at, and just do the next thing.  Target one behavior, and focus on that.   I come to the school table with a handful of highly desirable treats to bribe my kid through math since that's his bugaboo subject.  It feels very much like potty training a kid with m&ms.  Even my K'er doesn't need that level of rewards..... But, the point is, he needs it, and the fact that he's willing to keep trying at something very hard and frustrating to his brain is commendable.... I don't know if that'd work for your situation, but it's something that's helped life be smoother at our house.

We also don't try to do school with that child when I have to be out of the house.  The frequency of my medical stuff is one reason he's at public school this year. I know that's not on the table for you guys, but my kid needed to be productively engaged while I was out taking care of adulting stuff that I couldn't bring him to. (No minor kids at our medical offices.)

I wish I could take you out to lunch, fill your freezer with meals, and clean your house for you.

[Pen]

Can you ease your situation by sending him to public school?  Assuming he isn’t?  Then baby sitter would be the school for several hours per day on many weekdays of the year.  

Perhaps even a few of the children could go and you would have more time and energy for your own health situation and the visits and medical procedures it requires.  

[PeterPan]

11 minutes ago, moonflower said:

I'm going to shut up and let Peterpan talk.

Hahaha! Please carry on. I wasn't meaning to steal your thunder. 

6 minutes ago, moonflower said:

I also watched about a hundred hours a day of TV as a kid and suffered no long term effects.  I don't even own a TV now!

Does he have recreation or anything else he does for relaxation? Think about this. Many people with developmental disabilities need significant help to learn LEISURE skills. So he may literally NOT HAVE another way to cope with the stress in the house right now. Tv is superbly stress relieving most of the time. So he's calm, hurting no one, might even be learning something, and he's NOT GETTING STRESSED by all the crap going on in the house right now. Christmas is stressful enough, but your mom is desperately sick with some unknown illness. I mean, the stress has to be OFF THE CHARTS in that house! And the kid has NO WAY to deal with that stress.

Does he have other leisure skills? Does he play card games? Puzzles? Whittle? Assemble lures? He can't just go OFF a thing that is keeping him calm and have no replacement. That's a great way to have a lot of behaviors. 

[Pen]

25 minutes ago, BlsdMama said:

He's the one who essentially said that DS can't relate when his emotions are up - his ability to reason shuts down . And he's right.

 

That’s common for most people IME.

It probably applies to you too. 

And quite aside from your children in general and this son in particular, you probably have a lot of emotions related to your health situation.

There are things you cannot control. But you can when calm think about what sort of time you want now with your son. And even how do you want him to remember this time when, whether it is sooner or later, you are not a living presence in his life. 

Maybe he would do better being in B & M school (certainly true for my ds at that age) ; maybe he needs to be at a respite care home for awhile or from time to time to give you a break; maybe, though I doubt it, he would be better off if you let him watch TV 24/7.  Maybe when not so emotional you can think of other options, without reason and relating shutting down.  

The chances that punishments like taking away tackle box will be helpful are, imo, close to zero, and highly likely to leave him with sad memories, and over all to increase, not lower stress and distress.  

[KungFuPanda]

I wouldn’t get rid of the tv entirely, but I would lock it in a cabinet during the week and only have it out on weekends and holidays. 

I’d also revisit the school thing. If he makes bad choices, you can bring him back home, but the change of scenery/routine might give everyone a break and you could be pleasantly surprised. After the holidays is a good time to try a semester to see if it works. He might find a constructive interest that trumps TV. Your relationship is important and it sounds like it could benefit from a wee break. 

Edited December 18, 2018 by KungFuPanda

[Valley Girl]

First, BlsdMama, no judgment here. I can hear the desperation, exhaustion, fear, and the love in your voice. You're clearly running on fumes. Maybe I'm off base here. If so, disregard my suggestion.

Have you tried or considered a day hospital situation with a behavioral health facililty? (Child attends during the day and is home at night.) With his issues, is it possible that he needs different meds or different dosages? Getting that right in a situation where health care providers can actually see the behavior and issues over time--rather than relying on a 10-minute conversation in the office--may help the psychiatrist more accurately diagnose and/or prescribe meds that may help some of the behaviors. Working with counselors there (both him alone and you and your DH) may help your kiddo develop skills that will make impulse control easier in conjunction with meds. And it would give you some much needed respite and assistance in tackling this issue. Given your health challenges, it sounds to me like it may be time to call in the cavalry. I don't know about the insurance issues or if your own health situation will make you eligible for assistance on that end. I will just say that the right meds can make all the difference and make these issues easier to address for both you and your DS. And sometimes it really requires some intensive efforts on behalf of professionals to get there.  Best wishes.

[kbutton]

5 hours ago, PeterPan said:

I also don't buy the concussion thing. I've had two concussions.

Most of the people I know with concussions have memory problems and difficulties with concentration more than anything. Regarding impulse control and concussions, what I've heard is that it's hard to know if it's the chicken or egg--if the concussions happened as a kid, it's not all that unusual for the concussion to be a direct result of behavior related to impulse control. But anyway, I think that professionals often use it as a shortcut to diagnosis when it's often a part of a larger picture. Sort of like saying someone has x health issue because they are y, but the health issue long predates y.

Okay, I don't want to pile on because I think what's going on can be both a character issue and a lack of skills. This happens with my son who has autism, ADHD, and is highly gifted. It's often not just one thing or another. That doesn't mean that treating it like a skill deficit won't work, and it doesn't mean that treating it like a skill deficit doesn't mean you aren't addressing the character issue. This is a very hard thing to really "get." Super hard. It's rather counterintuitive sometimes.

I am going to point out until it's annoying, all the ASD traits I see. He might not have ASD. That's okay. I think the ASD and EF areas have huge overlap and often respond to the same strategies. I have seen a LOT of ADHD in adults in the family, and I can tell you that sometimes the adults I know with ADHD, even ones that are very emotionally intelligent, have stunning "holes" in their motivational makeup that make them seem very cold. Like, they often make decisions based on their own pleasure to the point of actually shooting themselves in the foot and seeming really rude to others at the same time. It's just--there's just a disconnect. Other people with ADHD aren't like that at all. But this trait, when I've seen it, occurs in certain folks with ADHD, and it's very autism-like. 

I am also harping on the ASD partly because of the way you are saying what you say--it's like you're past all the "normal" frustration and starting to use lingo that is a tell for "something else is going on." Might not be ASD, but that's often how people start to talk just before they find out the "more" is, in fact, ASD that flew under the radar.

1 hour ago, BlsdMama said:

So, I'd like to expand a little.  Yes, he has special needs.  However...  he is a fully functioning, normal IQ child.  He has ADHD - inattentive.  He was medicated this AM.

Here's the kicker....  And this is what I keep going back to - 

He only chooses to turn on the tv when my back is turned and he thinks he won't get caught.  Which means - he CAN exercise self-control, he just opts not to in some scenarios.

But we're talking about a kid who is days away from being 14.  While he is SN, I think we all may have a very different picture in our head of what that means.  This is a kid who is 100% self care, almost grade level, and could "pass" as typical if a little immature and impulsive.  If I gave him a long range "to do" list in order to do something else - for example, "I'm going to run a few errands and when I get back, I need A, B, C, D, and E to happen before you can go fishing," it would all be done.  No written list required.  However, if there is nothing "in it" for him, he's not motivated.

Truth is this kid has four years to adulthood - we have got to sort some of this out.  A few things are very motivating for him - working outside, spending time with Grandpa, fishing, and Trail Life.  But we have to work towards self regulating and while my other children moved towards self regulating, he only does so when there is something in it for him.

Formatting and comments go together...

This could absolutely be autism. Kids with autism do stuff like this all the time and don't realize how ridiculous it is. Some will even think they are being sneaky and successful.

This is going to be critical to any success you have, and Peter Pan has given some good suggestions. I strongly recommend begging Grandpa to step up and help with this. Beg. Pay for gas money for Grandpa--whatever it takes to build this into a REGULAR thing that you can use to build in more self-control. Seriously. You have more to work with than you think you do if he will do something he's motivated to do. Some people don't have that. You can't do that--I get that. But I bet SOMEONE can. 

1 hour ago, BlsdMama said:

Fishing every single week - and I'm not kidding, that works to keep him motivated.  I wish I was kidding, but I'm not.  If he has a short term carrot dangled in front of him for a quick pay-off and it's something heavily beneficial to him, then the kid can conquer the world.  (Or, in his case, chop 2/3 of a huge ash tree or break up concrete into rubble.)  He's done things that I don't expect of an adult man.  Conversely, if he is not motivated, we have the ongoing argument of why can't he watch tv......

I'm just boggled.  And I can't get a grasp on his age appropriate behaviours in one area and then a total lack thereof - unless something is in it for him.  And that is certainly a character flaw. 😞

ALL OF THIS could be autism. Every bit. You just described my son with slightly different motivations, but at 14, I can now leave him alone. Sometimes, I can leave him with his younger brother, but sometimes he can't help but antagonize him. 

Autism is all contrasts--sure, you can't ask him to stop kicking his brother for no reason, but yes, you can trust him with the power saw (for example). Or the other way around. Yes, he can do college calculus in 9th grade, but no, he can't manage to make a sandwich. Or the other way around. Sure, he can't tell a story about a kindergarten level picture, but he can understand his physics textbook. 

It's stunning the disconnects.

1 hour ago, BlsdMama said:

I hear what you're saying - but the kid is socially adept.  We have a daughter that is most likely HFASD.  She is not socially adept - needs cues taught, etc. He is socially adept and capable of understanding precisely how to carry on a conversation, correct responses, etc.

The counselor was good - no real education but his ability to relate to him on his level was solid.  He's the one who essentially said that DS can't relate when his emotions are up - his ability to reason shuts down . And he's right.

My ASD kiddo is strikingly socially adept a lot of the time. He is really good at fake it until you make it. Many people that meet him now have NO IDEA unless they've been around other kids who have a similar profile. And even then, it's little tells. 

1 hour ago, PeterPan said:

Right now it appears he is using the tv to self-regulate. He's bent toward anger, mood disorder, emotional dysregulation, and you're not offering to REPLACE the tv with something else to help him stabilize. You're just offering to take away the tv and leave him hanging. So in that situation, he's going to have to find ANOTHER thing to help him regulate, since that's what the tv was doing, and it's likely to be MUCH more mal-adaptive. He's also likely to have some behaviors of frustration.

If you remove the tv, will he then go do what you want? That's your big answer. If removing the tv is like ok now he's bored and he'll comply, then fine remove the tv. But it doesn't sound like that's how he's functioning. So you're going to remove what he's using to stabilize and regulate and make him even MORE de-stabilized.

Instead try *replacing*. The best way to get someone off a less-preferred stim and onto another is replacement. So you set a timer and you say hey let's do tv 15 minutes and then we're going to play a round of Uno! You can set timers, replace it with something of equal intensity (stim value, sensory input), replace it with time with a person who is offering to co-regulate.

It's also a win to *decrease* the stim. You don't have to be cutting out tv entirely to be winning. Getting some compliance around the tv and decreasing it slightly is still moving in the right direction.

Is there anyone in his life he is bonded with? Someone who enjoys him who can spend time with him 1-2 hours a day a few days a week? ANYTHING they would do would be useful. They can play cards, go shopping, anything. It will be time he's not on the tv and time he is working on being with others.

I really agree with these strategies. They sound like rewarding bad behavior, but it's more like transitioning from one coping mechanism to another. 

1 hour ago, PeterPan said:

This is awesome!! So this is sort of a secondary interest, not his primary? That would be really great to use with the PowerCards technique. https://www.erinoakkids.ca/ErinoakKids/media/EOK_Documents/Autism_Resources/Power-Cards.pdf  Here's a pdf, but there's a brief book. You could use his fishing interest and connect it to things you need to have happen by making cards with a fishing-themed picture and the steps. So then you just say here's your salmon fishing card, get this done and then watch tv. You need to teach him to do the steps independently yes. It sounds hokey, but actually powercards are an evidence-based practice, merging the person's special interests and the goals of the person working with them. 

Yes, and this is for EF, not just ASD. Truly. I went to a day long seminar at a local children's hospital on EF tricks, and this is a really big one that tends to be super successful.

1 hour ago, PeterPan said:

I would just like to make an observation about the language here. That's totally appropriate, normal, typical language. However if this dc has developmental delays, using an if/then construction might actually be beyond what he is completely understanding. And I know people are like oh no I know my kid understands! Well do language testing then. Psychiatrists don't do that. It's detailed stuff an SLP does, looking at syntax. We ran the SPELT (an expressive language test) on my ds and he BOMBED it even though he seemed to have tons of language!

Oh my word, I cannot agree enough!!! Besides the fact that most psychs don't do it, many of the best tests are just now being written to include older kids who could pass for functional with language when they were younger. My kiddo's verbal IQ and performance on MOST language tests is stellar (verbal IQ is well, well into the gifted range). Find the 'right" test, and he's a kindergartner AT BEST. This is a new and burgeoning field for studies, testing, and intervention. Language issues have been getting overlooked big time.

This kind of thing could be a huge thing for your son, and it WOULD NOT BE OBVIOUS. 

[Jean in Newcastle]

Another mom of an Aspie chiming in here.  If he has ASD or even without ASD but "just" ADD, don't think of it in terms of "4 more years until he's an adult".  Some kids take longer - and if they have ASD or EF struggles, then most of those kids take longer.  And it's ok.  Really. 

[PeterPan]

2 hours ago, BlsdMama said:

I hear what you're saying - but the kid is socially adept.  We have a daughter that is most likely HFASD.  She is not socially adept - needs cues taught, etc. He is socially adept and capable of understanding precisely how to carry on a conversation, correct responses, etc.

Fwiw, there are a lot of people who say this and eventually the dc gets diagnosed anyway. It's a pretty curious assumption, considering *how many* moms here on the board are on the spectrum. So none of them carry on conversations or have correct responses? The DSM criteria are actually much more subtle, and I can tell you that people who work with a lot of autism have ways to tease apart the deficits. They're probably there. There's a new CAPS test for pragmatics that is very well-reviewed. They'll look for subtle things in the reciprocity, like how many times he turns the conversation back to his area of interest. It's not merely whether he can have a conversation or not. If that were the standard, probably nobody who is diagnosed here on the boards would be diagnosed.

You could move on from the DSM diagnosis and see where he fits in the Social Thinking Communication Profiles. https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile  If you have time to read and sort through them, you can see where he is there. Also think through the support needed. He sounds like he needs significant support and like some of his strengths are masking his weaknesses.

[PeterPan]

57 minutes ago, Patty Joanna said:

I am not advising here.  I just wanted to say that I know a large family who have a couple of kids on the spectrum and homeschooled while they were essentially homeless for 2 years (lived in a trailer--the kind you can pull behind a car) and the mom was sick like you have been...  OK.  They got a home finally, and they are in a very small school district and the dad *insisted* that ALL the kids were going to public school.  They did, and you know what?  Those kids have THRIVED--none more than the ones on the spectrum.  They have got public money and a lot of expertise working for them and the parents are still really involved -- but they don't have to take lead on the education of their children who are beyond their expertise.  ETA:  the OTHER kids have done really well too, partly because they have a broader world now, and don't have to do so much care taking of their special needs siblings and seriously ill mom.

I make the comment because a few of the comments upthread have used the word "babysitting" in relationship to the school option.  But for special needs kids, I have seen remarkable ASSISTANCE and help and improvement in the lives of this and other families.  

You do what you need to do...and don't let homeschooling be an idol. 

 

Just liking ths wasn't enough. There's so much truth here.

[JumpyTheFrog]

My 12 year-old has trouble regulating his impulses. (I suspect ADHD.) Screens suck him in like a black hole. Every tablet, phone, and computer in our house has a passcode. We have an LG brand TV that also has a password. The few times we've forgotten to lock the TV he has gotten up in the middle of the night to watch. Once, about three or four years ago, he and his little brother watched 30 hours of Phineas and Ferb during the middle of the night in about five days. When we visit the grandparents it is a constant battle to keep him off the TVs, computers, phones, etc. Last summer we caught him getting up a few hours early to watch YouTube videos of people playing games like Agar.io.

I know you have a lot on your plate. If I understand correctly, all other electronics in the house have passwords. I'd sell both TVs and buy a replacement with a passcode. When life settles down a bit, you can work on some of the other ideas people have suggested. It sounds like you need a temporary solution now, and this seems like the easiest one to me.

Edited December 19, 2018 by JumpyTheFrog

[PeterPan]

2 minutes ago, Patty Joanna said:

I learned a lot of it the hard way.

One thing I learned, also, is that the only thing you HAVE to do is the thing that ONLY you can do.  

Eg.: Lots of people could have been (and were) my son's teacher/s.  But only I could be his Mom.  

(I learned that in a class on decision-making/discernment.)

This is SO true! And I had to reread it a few times to figure it out, lol. I was very hard for me to bring in help (in-home ABA, etc.), because I thought if he worked for someone else he would love them more than me or not have anything left for me. Instead the love was like a candle, that being with them and having that time fanned the flame, and I got MORE love and more interaction. 

The way our behaviorist puts it is that some people do better with intense interaction and that supporting that all the time is fatiguing. It's ok to have more people on the team and outsource, because what matters is that it gets done and his needs are met. 

[Storygirl]

BlsdMama, I am feeling really sympathetic toward you, because I, too, have a son like this (except my son is not able to apply himself to big tasks the way you say yours can).

It's really really really really hard to tell with my son what behaviors stem from the ADHD and other (MANY other) diagnoses that he has, and what behaviors are due to character flaws.

Because there are definitely character issues involved with my son, and I believe you when you say that they are there for your son, as well. Having diagnosable conditions does not automatically mean that the person is simply a good person who can't help it.

Sometimes my son makes wrong choices on purpose. He does. A lot. Sometimes his wrong choices are due to impulsivity and/or lack of understanding. But, really, DS does wrong things on purpose, because he is the kind of person who likes to test all of the rules and thinks he can get away with things when no one is looking. Let's be honest, some people really are like that, and to say that those traits are all due to special needs..........some of it is character. People can be defiant purposefully. People can circumvent rules purposefully.

It's interesting, because I don't see spectrum in your posts, necessarily. I think what you describe could be ADHD with EF plus perhaps ODD.

I respect PeterPan's ideas, but her advice comes from having only one kid to deal with (okay, two, but her oldest is away at college), and it is just impossible for you give all of yourself to one kid when you have nine. I hope, though, you can sift through the ideas presented by her and others and find some new things to try.

[Storygirl]

Also, about school.

I was afraid to send DS to school, for many of the same reasons you list, as well as other things. But we came to the point a few years ago when we had to do it, because I didn't have the personal resources left to homeschool any more. I was beyond burned out.

I was so worried it would be the wrong choice, but it was a really good choice for DS. He does gravitate toward friends who have inappropriate behaviors, so yes, we are dealing with that. Right now, he does not socialize outside of school hours. Do I worry that he will be attracted to drugs and alcohol, etc? Yup. He has risk taking, rule challenging, addictive personality and is attracted to things that he knows we feel are wrong (bad language, inappropriate jokes, etc.). So it's a big concern, and we are watching it. BUT otherwise, being in school has had so many positives for him.

I never thought it would work. Never. But it's been really good. The issues that have come up have been easier to deal with than dealing with him all of the time all day long. Because he has often required more attention from me, due to arguing and misbehavior, than my other three kids combined, and it was sucking me dry.

Edited December 19, 2018 by Storygirl

[PeterPan]

50 minutes ago, Storygirl said:

Because there are definitely character issues involved with my son, and I believe you when you say that they are there for your son, as well. Having diagnosable conditions does not automatically mean that the person is simply a good person who can't help it.

To me the thing about stepping up explicit instruction and supports is it lets you see what remains. I totally agree there's sin nature on top of deficits, absolutely. 

 

Edited December 19, 2018 by PeterPan

[ktgrok]

4 hours ago, BlsdMama said:

Absolutely.  That, looking at things he ought not, making every SINGLE bad choice in an attempt to impress people - all of it.

He definitely has a disability - no doubt about it.  I'm a huge advocate of addressing the needs.  However, we see a psychiatrist every three months to re-evaluate any ongoing needs.  It's a constant effort, not just an eval and done.  And we've had different evals done (see above) to make sure we're on the right track.

No child is a typical child.  Not one.  So we're trying to balance out what works with him and it's not much.  Fishing every single week - and I'm not kidding, that works to keep him motivated.  I wish I was kidding, but I'm not.  If he has a short term carrot dangled in front of him for a quick pay-off and it's something heavily beneficial to him, then the kid can conquer the world.  (Or, in his case, chop 2/3 of a huge ash tree or break up concrete into rubble.)  He's done things that I don't expect of an adult man.  Conversely, if he is not motivated, we have the ongoing argument of why can't he watch tv......

I'm just boggled.  And I can't get a grasp on his age appropriate behaviours in one area and then a total lack thereof - unless something is in it for him.  And that is certainly a character flaw. 😞

Actually, it could be a deficit of theory of the mind, or it could be the EF issues. But I'll chime in that to me it sounds like ASD as well. Also, my kid with EF issues had no real concept of cause and effect for the longest time. So he could be punished, and then do it again, and not put it all together. If you must punish, don't go for big punishments, go for immediate ones. If he has serious EF issues and possible brain damage, the closer in time the punishment and the act are the more likely he will make the connection and change behavior. But really, it's likely that no punishment will work right now, and that rewards may not either if they are too far out (5 days later is WAY too far out I bet). Kids with EF issues need immediate motivation. They are good at urgent, not at important. They make great firefighters and medics, but lousy accountants 🙂 

4 hours ago, moonflower said:

I just want to be really clear on the character flaw - you are saying that he has ADHD and maybe some other issues (TBI?) that are maybe not that well controlled, and the character flaw is that he is not as responsive to long-term reward as neurotypical kids, or that he requires more immediate and pertinent consequences and rewards and more structural support to do things that other kids can do without those supports?

Because I have these same character flaws.  I do see them as character flaws, but I think that's not really the current thinking, and certainly many people on these boards were pretty critical when I first wondered whether what I had always seen as laziness might actually be ADD.  

I own and operate a small business that provides 100% of our (top quartile in the nation) income.  I have 7 kids, 4 at home during the day and 3 in school.  But I require constant small rewards and massive structural support to stay on task, do the right thing, put things up where they belong, clean up after myself, replace the toilet paper when it's out, finish my work, do the boring parts of the job, fill out paperwork on time, take out the trash, not waste 10 hours researching fabric for a quilt I'll never make, etc.

 

Yup. Teaching him ways to get around his deficits is better than trying to bulldoze over them. Start by locking down the TV, but eventually teach him to set his own controls. For instance, when I'm writing on a deadline I set up software that locks me out of these forums during the day 🙂 I can't manage to self regulate, but I can set up software to do it for me. 

4 hours ago, PeterPan said:

Hahaha! Please carry on. I wasn't meaning to steal your thunder. 

Does he have recreation or anything else he does for relaxation? Think about this. Many people with developmental disabilities need significant help to learn LEISURE skills. So he may literally NOT HAVE another way to cope with the stress in the house right now. Tv is superbly stress relieving most of the time. So he's calm, hurting no one, might even be learning something, and he's NOT GETTING STRESSED by all the crap going on in the house right now. Christmas is stressful enough, but your mom is desperately sick with some unknown illness. I mean, the stress has to be OFF THE CHARTS in that house! And the kid has NO WAY to deal with that stress.

Does he have other leisure skills? Does he play card games? Puzzles? Whittle? Assemble lures? He can't just go OFF a thing that is keeping him calm and have no replacement. That's a great way to have a lot of behaviors. 

Agreeing that he's probably super stressed, and TV is a way to self medicate. Public school isn't something you are okay with, but would he be able to get any kind of scholarship to a smaller private school or something, to give him time away from thinking about everything? 

2 hours ago, Jean in Newcastle said:

Another mom of an Aspie chiming in here.  If he has ASD or even without ASD but "just" ADD, don't think of it in terms of "4 more years until he's an adult".  Some kids take longer - and if they have ASD or EF struggles, then most of those kids take longer.  And it's ok.  Really. 

This is very true. And I know that is an issue with all your health stuff, and you want to know that the kids are as independent as possible as soon as possible, but really, he's going to need longer. Most experts say to consider a kid with ADD to be about 3 years behind in maturity, at least. So don't think of him as 13, but as 10. And in some areas he may be even younger. He may need a much slower, more gradual path to independence, and that doesn't mean he won't get there. It just may take longer. 

Finally, get him outside, and doing stuff like fishing as much as possible. It is probably his other stress relief. Can he do some volunteer work or something in the outdoors, to supplement this? I still swear that volunteering at the avian rehab place probably saved my son's life and kept him out of trouble to boot. 

[Katy]

I wouldn't choose to fight this battle at this time.  And I would absolutely put a kid with special needs like this in school as a trial.