school refusal...

[gardenmom5]

this has been an ongoing problem for years - only know it has exploded.

I've read the stuff on pathological demand avoidance/"deep-in-defense=mode" etc., and he has been totally resistant.  I've seen medical professionals who specialize in spec. needs kids throw up their hands in frustration with him.

anything?  other than allowing him to sink?

[maize]

How old is he now? (Might be in your signature but I'm on my phone)

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[Pen]

I’m also wondering about his age.

 Might there be a residential program that would be a better fit?  A techschool program? An apprentice program? A jobs preparation program? 

Is there anything positive in life he wants to do? 

 

[Pen]

I’ve been finding Peter Breggin and Avi Fishoff videos helpful with regard to refusal to do school work — but my kid has been willing to physically go in terms of body to buildings.  

Could there be a take GED option offered? 

(Mine isn’t spectrum, but sometimes resistance is resistance.) 

 

Edited October 2, 2019 by Pen

[Pen]

What about basics like food etc?

 

[PeterPan]

1 hour ago, Pen said:

What about basics like food etc?

This is SO TRUE. My ds has been a mess lately, so I've just been FEEDING. Turns out he grew again, ugh.

[Storygirl]

I'm not clear on whether he is in brick and mortar school, or if he's homeschooling. If he is in brick and mortar school, is he refusing to go, or is he refusing to do the work?

[Pen]

@gardenmom5 update?

[PeterPan]

15 minutes ago, Pen said:

@gardenmom5 update?

She ate two pans of brownies and is comatose. 

No seriously, I hope things are looking a little more up! Who knows, just when it seems really bad, they break their legs or something and life changes. My little refuser turns out to have been growing. That doesn't explain 10 years, but at least it explains why it was *worse* this week.

[gardenmom5]

update is.... I've dropped his therapy appointments.  it was an ugly fight every. single. time.  he'd use it as an excuse to skip. (because it was his "power").  I'm hoping he realizes he felt better when doing it.  sometimes, you only realize something helped by its absence.

and... it's going to take time.  

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[gardenmom5]

1 hour ago, PeterPan said:

Yeah, I've had that with ds, where he and the person just were not clicking. And it's ok. Even if it was good, there are lots of other good things too. It might have been good for a reason that is reproducible other ways, or there might be another good thing worth doing.

He might also be at the stage where he's ready to think through his goals and have buy-in. But yeah, the pickiness in that is hard. 

Are there consequences to his not receiving that service? Like will he have more of x symptom and need to consider a medication? It's something he could be really concrete about as it happens. Taking over his own self-care is an important step.

quite the contrary - every time he'd go back with her - I could hear HIM having cheerful and very positive interactions.  he just wants to be a hermit, and he was being forced to leave his shell.

medication hasn't helped - he was on antidepressants last fall/winter for help with anxiety, and when we upped his dose, he started displaying suicidal ideation.  it was scary.   2dd is a pharmacist, and she'd expressed concern when she first heard they'd been prescribed for him.

this provider doesn't prescribe rx, but he's also refusing to see his neurologist - which I haven't pushed because outside of prescribing meds (which weren't helping), she wasn't doing much else.

eta: the rx didn't help his anxiety at all, so all negative side effects with no benefits.

Edited October 3, 2019 by gardenmom5

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[gardenmom5]

42 minutes ago, PeterPan said:

What are his genetics for MTHFR, COMT, etc.? I always forget who is doing that and who's not. It totally makes sense that some people would have negative reactions to anti-depressants.

he's heterozygous 1298, don't know comt off the top of my head.

he's on 15 mg mthf.  his diet is crap, because he won't eat anything else.  he can go days without eating.

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[PeterPan]

31 minutes ago, kand said:

PM you with what we did,

I'd be interested too, if you want to share. I have a feeling it's going in the file away for a few years down the road folder, sigh. Hindsight is definitely welcome.

[gardenmom5]

On 10/1/2019 at 8:19 AM, maize said:

How old is he now? (Might be in your signature but I'm on my phone)

 

On 10/3/2019 at 8:56 AM, PeterPan said:

That's kinda weird for the age.

I dropped everything from my sigs.

he's 14.  he'll be 15 in January.

[gardenmom5]

On 10/3/2019 at 10:07 AM, kand said:

Here’s some info: https://schoolrefusalhope.org/treatment-programs/evidence-based-treatment-centers-of-seattle-seattle-washington-intensive-outpatient

thank you for the info.  this doesn't look like it deals with autism, which is a brain based developmental disorder, as a cause.  that does change things, and is what feeds his anxiety.  his anxiety has not responded to standard NT anxiety treatments.  It hasn't even responded to most anxiety supports for asd kids.

he is going to most of his classes most of the time, just not all.  big improvement from last year when he'd go hide out under the stairs, or just walk home.   I've had him in therapy with a psych, that he liked, and who deals with kids with developmental delays.  he just sat there and would go to sleep.  it's his was of "checking out" and refusing to participate.  if he'd had his way, he wouldn't have gone.

[maize]

On 10/3/2019 at 9:12 AM, gardenmom5 said:

he's heterozygous 1298, don't know comt off the top of my head.

he's on 15 mg mthf.  his diet is crap, because he won't eat anything else.  he can go days without eating.

Ah, this one is tough.

I'd forget about trying to get him to do any kind of schoolwork and focus on getting him to eat. Human brains do not function well without food.

Food refusal though is it's own very tough nut to crack. 

If you get a chance read the book Brave Girl Eating. It's about anorexia, but it goes into some of the science of what happens in a malnourished brain. Those effects are going to be there whether the individual is obsessing over things like weight or not. The brain must have food.

My dh's mental health tanks horribly when he gets into food refusal mode. 

[gardenmom5]

1 hour ago, maize said:

Ah, this one is tough.

I'd forget about trying to get him to do any kind of schoolwork and focus on getting him to eat. Human brains do not function well without food.

Food refusal though is it's own very tough nut to crack. 

If you get a chance read the book Brave Girl Eating. It's about anorexia, but it goes into some of the science of what happens in a malnourished brain. Those effects are going to be there whether the individual is obsessing over things like weight or not. The brain must have food.

My dh's mental health tanks horribly when he gets into food refusal mode. 

which is why I would let him eat junky convenience food. a hamburger he'll eat, is better than the roast and vegetables he won't eat.  it does a number on his blood sugar too - and the mood swings.  sigh.  he does take very high quality vitamins - which is better than nothing. -  I struggle to get protein into him too.

[gardenmom5]

1 hour ago, maize said:

Ah, this one is tough.

I'd forget about trying to get him to do any kind of schoolwork and focus on getting him to eat. Human brains do not function well without food.

Food refusal though is it's own very tough nut to crack. 

If you get a chance read the book Brave Girl Eating. It's about anorexia, but it goes into some of the science of what happens in a malnourished brain. Those effects are going to be there whether the individual is obsessing over things like weight or not. The brain must have food.

My dh's mental health tanks horribly when he gets into food refusal mode. 

and maize - I dont' want to go into detail on a public forum, but you would understand priesthood blessings.  so, I'm trying to hold to those.

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[gardenmom5]

51 minutes ago, PeterPan said:

Haven’t done the teen male yet, but weren’t the puberty hormones supposed to settle by 14? So then maybe it’s his genetics and actual chemistry not transitory? You might check his other genes. I have an MTHFR defect (need methyl) but others (COMT, VDR, TPH2) that make methyls go high or not tolerated. And methylation too high would cause the behaviors even bipolarish moods you’re describing.

Hard to get the mind in order and use cognitive when the body is a mess.

Beef is hard to digest and unnecessary. Are your sensory needs opposite? That burger vs roast could be as much about sensory. My ds (infamously hyper responsive on sensory) like thick meat that makes me (hypo responsive for sensory) cry. Go figure. I eat things ground or in soup, and the creamier the better.  If your ds doesn’t cook for himself he may not have figured out the patterns. Try offering same food two ways and see if there’s a pattern.

 

the mood swings were blood sugar - he'd have them when he was three. the rages....mood flip on a dime.  that's got to be part of the asd expression in our family.  I have another one who had really volatile mood swings (even worse, and in a different way.  homozygous 1298.  doesn't supplement. does some therapy that is really effective - not cranial-sacral, can't remember the name.  yoga works really well for me.) - was eventually diagnosed asd (after YEARS of doctors).  I did it too when I was younger.  (I look back, and I see many of the same asd traits.)  

I can tell the difference when I get my protein from beef vs. chicken.  I feel a LOT better.

as for what he'll eat - at this point, it's his pickiness, not sensory.  he won't even try something new.   he'll even refuse to eat something he ate last month.  then next month he might eat it again.  1ds did get him to try orange chicken last spring.  he didn't want to admit he liked it.

I'm not even sure we did the whole genetic thing on him.  his mthf test was run through the ND.  I'm going to do a 23&me for him on black Friday.

 

eta: and hormones settle when they do.  some start early, some start later.

Edited October 7, 2019 by gardenmom5

[PeterPan]

nt

Edited October 10, 2019 by PeterPan

[gardenmom5]

19 minutes ago, PeterPan said:

So I used to have hypoglycemia like that and I have friends who deal with that and I get it. But I'm just gonna toss out that if the doc ONLY tested for the MTFHR genes and not the rest, he really, really could have missed stuff. Might be worth the extra $30 to move it up and test completely sooner. In my case, what looked like volatility due to blood sugar was actually my uncontrolled methyl levels. And you're giving him a heavy methyl donor source without complete testing to know. 

So it can be more like he's unstable anyway due to the methyls and you bring it out and take it beyond his ability to cope when the blood sugar drops. It's just something to look into by looking at the complete genetics. 

And, if you want a really radical observation, the nutritionist who healed my low blood sugar had me eating fruit. It's really counter-intuitive. 

the savings by waiting until black Friday is $100, not $30. we've had him on an off mthf.  he was up to 20mg at one point.  we tried to run him up to 30mg (the highest on the chart), but it was too much for him and we didn't get beyond it.     one thing I've learned about mthf - ramping (either direction) slowing is important.  I was on 2mg for a few years, because that was all I could tolerate.  I'm currently up to 7mg.  I jumped up to 10mg's last year - it didn't go well.  I'm doing something else right now - so I don't want to do too many changes because we want to see what actually might make a difference.

he won't eat fruit.  he won't eat vegetables.  (sometimes he'll eat a potato in some forms.).

[PeterPan]

We have a running joke that my ds eats "corn-ritoes" ie. a bag of frozen sweet corn from Trader Joes, cut open and peeled down like a burrito. He eats it right out of the bag, so I try not to run out, lol.

[gardenmom5]

it's being a rough week on me.  he's basically locked himself in his room.  he'll come out for food and bathroom - and that's about it.

he has no computer access, and 1ds was here yesterday and got his phone. (which he'd refused to surrender and had hidden somewhere in his room.)

[maize]

11 minutes ago, gardenmom5 said:

it's being a rough week on me.  he's basically locked himself in his room.  he'll come out for food and bathroom - and that's about it.

he has no computer access, and 1ds was here yesterday and got his phone. (which he'd refused to surrender and had hidden somewhere in his room.)

What is he doing when he is in his room, do you know? Is he sleeping?

[PeterPan]

Sorry it's hard.

Edited October 10, 2019 by PeterPan

[gardenmom5]

3 hours ago, maize said:

What is he doing when he is in his room, do you know? Is he sleeping?

sleeping.  when he had his phone, he was watching something on it.  now, he's parked himself in front of the tv in the basement (warmer room.)  he has no x-box access, and wasn't much into it anyway.

2 hours ago, PeterPan said:

One, methyls too high. Two, growing. Three, go on a cruise.

We live at the edge of this, and for us pairing and resets are big, hence the suggestion to go on a cruise. Or just go camping, kwim? The weather is good. Or ski if that's your weather. 

But yeah, when my ds' methyls are high, he's pretty much impossible. When the body is a mess, it's hard for them to bust through cognitively. Sigh.

Sorry it's hard.

At least for my ds it's a pulling in, a way of saying he can't problem solve and wants to withdraw. So it's sort of autism (falling into the aut,withdrawal) plus communication plus problems plus the body making everything hard to deal with plus plus. 

Do you have anyone fresh he can hang with? Like just to spend the day with or an hour with or go minigolf with? My ds sometimes perks up with a fresh face. Sometimes I can't bring the energy to get us there. Not ideal to say that, just reality. Sometimes we really need that fresh face and infusion of fresh energy. Sometimes it's the novelty. Don't really care why, just that it works, lol. Like invite someone over and bake a cake, kwim? Someone who will talk to him if he comes out, someone who likes him. 

I will experiment with the methyls - I'm starting to lower his mthf and see if it makes a difference, it will still take awhile.  

definitely growing - but that's not why.

I'd have to go on a cruise by myself - it's the start of dh's extremely busy season and he's attached to his phone.  I have thought about taking off and seeing 2dd and the baby.  previously, I wouldn't go because I had to "take care of" dudeling.  might be good for him.

and I agree, he's feeling overwhelmed, so he's withdrawn and shutting down.  I asked him a few days ago if he wanted to have anyone over on Friday for a LAN party.  something he has usually really enjoyed.  not interested.   he generally hates going places, and would rather be a hermit.  I've tried baking cookies with him (letting him chose what kind) . . . . he's happy to let me do the work, while he eats them.  both as dough, and baked.

 

[PeterPan]

It's hard. 

Edited October 10, 2019 by PeterPan

[gardenmom5]

2 hours ago, PeterPan said:

fatigue from the growing or depression? My ds spent the day moping and when I brought out ice cream he ate 3/4 of a carton by himself! 

Maybe just run genetics first? You have no clue what he needs and would just be guessing. He could be unnecessarily miserable if you make changes without full information.

Yup. Cruises can be crazy good for teens. Tons to do, tons of independence, tons of food. 

So I can tell you what our behaviorist told us, that if I want him to be able to travel we have to DO it. So I'm not sure you can get him out the door for a cruise (or camping or whatever), but you could try. My ds was as anxious as you'd expect. Nuts, he wet his pants the first three days! But once he settled down, he REALLY like it. You could see what Story's kids think of cruising. She has a lot of teens and has taken them multiple times. It's a very low stress way for you, because you get food and rest, and it's good for the kid because he gets what he needs (mental health, time with people but also breaks). 

And no, I didn't take my dh and won't be taking him next time either. Might be weird, but my dh didn't want to go. You could take someone else if you want (girlfriend, sister, mother, whatever). That's what I'm doing.

LOL

It's hard. Sometimes they need more than us to perk up. For my ds, perking up and coming out of the aut kind of go together.

He's sleeping because he's bored.

I wouldn't ever take him on a cruise.  (I really don't have much interest in going on one - except maybe a *small* boat that can get up the fjords in alaska.  or maybe an artic one for the northern lights....)
  the last two times we've traveled (this year), he stayed in the room unless his presence was required (he found somewhere he could run off and be by himself, and parked himself there.).  He turned the volume off on his phone (I had to make it a rule he wasn't allowed to turn it off) - one time, when I tried to call him to offer him a helicopter ride - he never answered.  Each time we've gone somewhere, he becomes even more angry that we didn't let him just stay HOME.  Not to mention trying to herd him through an airport...…. (going up the down escalator, hanging back so far I was afraid he wouldn't make it to the gate . . . . . )

tbh: your behaviorist would probably not be successful with him.  I can tell you right now - we've TRIED what your behaviorist suggested.  he digs in his heels, and actually becomes worse forever after.  When he was younger, he liked great wolf lodge.  not anymore.

 

[PeterPan]

I'm sorry it's hard. 

Edited October 10, 2019 by PeterPan

[gardenmom5]

3 hours ago, PeterPan said:

Just to point out the obvious, she was working with my ds, not your ds. Actually I was going to ask if he ever had ABA. 

 

and you were sharing it, and strongly implying, as though it should work for me too.