ASD, internet addiction, and PS-issued Chromebook

[TechWife]

7 minutes ago, ScoutTN said:

I was only looking at private, Christian programs. I am sure government run ones would be different. 

Cost going to vary widely. States rarely run the programs. They may provide benefits for a specific person that pay for the program for that person, but in reality there are relatively few residential schools &  programs run by states. I didn’t realize that there are legitimate therapeutic residential/boarding programs run by Christian organizations. 

[Ausmumof3]

On 12/30/2023 at 2:41 AM, PeterPan said:

My ds has given me two concussions. I've been told by multiple sources not to call the police. De-escalate, walk away. Go into a room and lock the door. Btdt. Multiple times. When we get stressed and are in danger our problem solving goes down. That's why I'm saying, having btdt, that there *can* be answer that is very careful problem solving. You get yourself to safety. You take a deep breath and calm down. You stop and get back to rational and think of other ways to get this calmed down. Could you wait and do nothing? Could you drop demands? Could you call someone else to come? 

The risk of people with ASD being shot or tasered is significant. I'm not saying allow something unsafe to happen, but sometimes we can stop, get ourselves to a place of safety, and make a rational choice.

Has op done work learning about the Zones of Reg? If they work on Interoception and read about the Zones of Reg, they may get enough understanding to remove themselves and drop demands and de-escalate BEFORE these behaviors occur.

Think about it. What tool do the police (or anyone else for that matter) have that you do not?? When things are hard we want magic cures, experts, someone to solve it for us. We assume professionals and paid people know. We have to be very realistic about this. 

 

Is there anything you wish you’d done earlier to change the trajectory? I’m worried about a friend’s child who is approaching preteens and I can see things going a similar direction 

I have suggested the mum take a basic self-defence course but she’s not willing.

[PeterPan]

Ok, another thing you can learn quickly to implement and make a difference. Power cards. You can find other videos if you don't like this one. There's the most obvious implement (use their interest to create a motivational/instructional device) but it's more than that. You're going to learn, in a quick video, how to differentiate a primary and a secondary interest. We'll say in autism to "use their interests" but that just ignores what happens when you do!! You talk about their primary interest and suddenly you have debates and fights and rabbit trails and them saying you're an idiot. So look what happens when you can identify or *lead them into* some secondary interests. Now you have the ability to identify an area that is *enough* interesting that they're willing to use it for your purpose (that cognitive snap!) or whatever without it being this whole protracted debate. There is no way I can talk about my ds' primary interests and most therapists will tell you NOT to as it distracts from the therapy/intervention goals. So this idea that our kids do have some secondary interests and that we can harness them in creative ways is pivotal. 

I don't make the cards. I use the concepts to do things that *are* appropriate to my person.

 

 

[ScoutTN]

40 minutes ago, TechWife said:

That’s approximately equivalent to a college education at some universities. I wouldn’t be surprised if average income people refinance their houses, empty college funds, take on additional work, etc..

 

Yes. But even those choices are not possible for many people.
 

Last year, I helped another mom research affordable options and there were none of except wilderness/boot camp type programs that were totally not, not what they wanted. Her son has issues, but is not on the spectrum, so different from the OP’s scenario.  

[PeterPan]

38 minutes ago, Ausmumof3 said:

Is there anything you wish you’d done earlier to change the trajectory? I’m worried about a friend’s child who is approaching preteens and I can see things going a similar direction 

I have suggested the mum take a basic self-defence course but she’s not willing.

LOL Well I can tell you I was taking boxing at the time and I didn't do the things I could have done. Apparently I don't have very fast reactions. 

The things I'm listing are the stuff I learned the hard way. I've listed out some books today in several posts and listed quite a video videos. This is the stuff I've done that has worked with my ds.

My ds is not non-verbal.

My ds is not ASD3.

My ds is not dealing with ID but in fact has a gifted IQ.

I'm not saying this is everyone's list, but this was our list. I can tell you that for me it worked better to stop asking for help and to become the help. I SO wanted someone to help, and that was the passive victim thing. Our behaviorist once suggested I get RBT training, and I asked why. I thought fine, I'll do RBT training so I'll finally know the super sauce that they know and do this RIGHT! And she's like no, it's because it might give you the CONFIDENCE to know you can do this. 

That's not saying we're doing this all right all the time. And it's not saying I don't need/use help because I use a LOT. I build a team and I use our available state funding and I use hours and hours of help for my ds every single week. Am I emphasizing that enough? Every person, every specialty, everything I could find.

What I usually do is more obnoxious. I get trained on the thing (social thinking, Zones, Interoception, whatever) and then I hire someone to do it. That way I know when it's being done right. LOL 

When people come over to LC, we usually give them these shortcut lists, like I'm doing here, of 6-10 things that might help. People pick something and just start working through the list. You triage. When I talk with people irl, we're triaging. What would get you stable, what would make a difference, what could you actually do? 

If you wanted the super short list, interoception and genetics. Everything else is protracted learning. I've gone to a lot of training workshops honestly. We have a disability lending library in our state and at one point I went through it borrowing every book I could read on behavior. I've gone to professional conventions. I sneak onto professional FB groups. I watch youtube. 

There is no overcoming chemistry, so that has to be tackled. And chemistry is complex, which means you're either guessing or informed by genetic realities. I ran genetics, which is a huge rabbit hole and something I spent an obscene number of hours researching. I don't know everything but I keep trying to learn. The pieces come together and you notice patterns. To me, if you can learn enough to fix one thing or prevent one major error (that lands them in a hospital) you've accomplished something. 

Our behaviorist was helpful with keeping me sane, talking through things, but also validating things I was doing that were good foundations. Like she said to teach him (and emphasize, really teach him) that he takes the med he's given. So I can hand my ds a med, and even if he's really whacked usually someone can get the med into him. Super important piece being willing to comply with meds. Drop language, hand with a glass, stand there. Every single time. It's a safety thing that they're willing to comply with meds, at least in our house. Maybe not everywhere, but in our house it's a safety thing. If I can get a med into you, I can solve problems.

Our doctor gave us various tools at various points. There are some lower level things a GP type doctor can give you to calm down a situation. It's good to have those talks and have those meds on hand. 

Ok, your friend's dc is preteen? I would hot fast do interoception. I would prioritize that #1 because it's going to give them a common language, more self-awareness, more others awareness, and improved problem solving. You cannot change that teen years and teen hormones are hard but you CAN improve the common language, self-awareness, and problem solving. My ds never disputed me when I said he was being irrational/psycho. We had done so much interoception work by that point that he kind of accepted it or acknowledged it and acknowledged the need to problem solve.

Improved interoception (which you can do with the curriculum through Kelly Mahler's site) will improve their ability to self-advocate and change not only environment and stress but also meds. Meds are a super common need at this age and that's ok. Genetics helped us predict med reactions and choose more accurately. We're able to target some things to treat (zinc, D etc.) that help stabilize him to use *less* meds. That's every parent's dream probably, less meds, as little as necessary. Our ped ran labs and found things too to guide us. So we're very concrete and evidence based in some way, not just kinda out there throwing pill bottles at him, kwim? I either have labs or genetics or both driving the targeted supplements. They let us keep the med doses low. What I *can* treat with supplements accurately I treat that way. It's just a goal to me because I know how hard it is to treat these issues with meds alone. That might be controversial but I'm just saying. Meds do not change a zinc or b12 deficiency or low thyroid. Might as well treat identifiable problems and these kids sometimes DO have them. My ds' thyroid is a little low btw, which our pdoc said does in fact drive behaviors and exacerbate them in sensitive kids. My ds doesn't want to do more bloodwork, so for now we're deferring on thyroid meds and taking selenium, putting them off as long as possible. Maybe with more maturity (or increasing symptoms) he'll get there. So I'm not saying labs are super easy.

Edited January 2 by PeterPan

[PeterPan]

For @Ausmumof3 this is a little rabbit trail. I'm sitting here thinking about this and I probably held back our access to problem solving meds by sticking with our GP instead of getting a developmental ped. I'm not sure, but I *think* developmental peds will do psych meds for these kids, right? It's true we were very slow to make that happen. Partly we were advised to wait till the teen years if possible and partly we just kept getting stonewalled when we tried. We had a pdoc insist it HAD to be xyz med when it was completely obvious that med would have been dangerous. That kind of stuff.

So the *reason* I went with a GP and love him and take my ds to him regularly is because I wanted the LONG TERM WIN of a dc who goes to the doctor. I think we all know kids with autism who don't go to the doctor, don't like change etc. etc. So I wanted that win. I wanted a local family practice where I could take my ds from now all the way into his adulthood, a long term win for his health. Might not be autism specific or perfect but I really wanted that win. 

But I agree, that probably slowed us down on med access. This family doctor had said upfront he was not the person for meds, and he would see ds once or twice a year, where he might seem relative fine, and then I would just tell myself to wait, that it was me, that the doc thought we were fine. 

I was asking for our current antipsychotic med a year or two before we got it. You have this sort of transition from thinking you need it to oh my lands being sure you need it to beat down every door and must have it, kwim? And that process is several years. And I was very scared because it's APPROPRIATE to be very concerned. He's on a med that has a list of potential side effects that are pretty nasty frankly. And he has *almost* none. The one (energy) we just kinda make work. It's probably making his thyroid worse. We don't tell him that because it can't be helped. We just tell him when it gets bad enough and he's ready he/we can make the choice to do labs and get thyroid meds. 

There's some, um, I don't know lying to this? Selective information. His support level is 2 and he requires support. I do not imagine him to have complete maturity to decide what he needs. I take on myself to make the hardest decisions because that's what parents do. Sometimes it's very hard to be the parent, sigh. You take it on every end. If you don't do stuff, you get hurt. If you do stuff, you're worried you'll hurt them. It's sort of a perverse quandary and there's a point where it seems better to let yourself be hurt than to hurt your dc, which is why you're slow to do the meds.

 

[PeterPan]

55 minutes ago, Ausmumof3 said:

change the trajectory?

Perfect parents will have this happen because it's the dc's chemistry. Our pdoc says it's something about their brains and instability during all the change. Pdoc had explanations but basically says they become less stable and that the stability can improve noticeably in mid-20s. So pdoc was saying not to assume what is happening now is *forever* but just to do what it takes to keep them stable and safe through a very unstable time.

[PeterPan]

1 hour ago, Ausmumof3 said:

self-defence course

You're not going to out physical a hormonal growing teenage boy. My ds is significantly taller than I am and was quite dangerous when he was much smaller. There is no out physical. Well maybe if you're some fit jujitsu person, but not for me, lol. There is de-escalation, learning the zones, becoming more self-aware, realizing where they are (in the zones, with their bodies), improving communication, improving collaboration, improving problem solving.

Interoception will help the mother work with her dc better and her dc self-advocate better. Other than meds, to me it's a #1 thing to be doing.

I had researched other things. Like there are methods they use for mindfulness and destressing. There's something Meditation on the Soles of the Feet and studies behind this. But interoception work takes it so much farther. To me, it's a #1 tool. If she does that and reads about the Zones and focuses on de-escalation and collaborative problem solving AND gets the pdoc help, she can hopefully get where she needs to be.

I don't think kids get as much SLP services as they really need to meet their communicative needs. That's a whole other discussion. 

Edited January 2 by PeterPan

[PeterPan]

3 hours ago, Ausmumof3 said:

wish you’d done earlie

I'm thinking about language here and I'm trying to remember where I learned some of the strategies I use. I suspect they were in that book Stuck Strategies or I have seen them modeled. That book is really good though. There's a book "The Way to A" that was pivotal in helping me understand how very *clear* I need to be. There's also the concept of *dropping* language demands when tension increases. So I'm going to get very intentional about language and DROP it a lot (all the way) or be really, really careful, really targeted. We tend to talk too much as women and these kids sometimes have language issues. So when we drop the language load, we improve their ability to think. 

I'm going to use a lot of collaborative problem solving type language, we language, let's language. There are books on CPS and whatnot and honestly they were sort of underpowered, almost trite, for what I was dealing with. I read them and I was like YOU HAVE NO CLUE, lol. But hey, read everything, take bits and use them in ways that work.

So yes, right now with my ds at 15 and on meds I'm able to use some language in a situation that is tense, where he's stressed, and it's going to be collaborative problem solving, we language. Something like "Let's solve this together. Let's find a safe solution together. We need to do this together safely." I wasn't able to do that so much before meds, sigh. Now I can. And we get situations like that where we have to go into some kind of collaborative problem solving safe mode because I *do* push his limits sometimes and take him places that really stretch him. That's not our 80% of the time at home scenario, but sure we've had that happen a couple times in the 6 months where he was at his limit to communicate and problem solve and we really had to work through it safely. 

Before meds, it was pretty much drop language, de-escalate, give space. 

[Ausmumof3]

@PeterPan

I found this resource which is local to me

https://studentwellbeinghub.edu.au/educators/topics/interoception-and-self-regulation/

 

is this the kind of thing that I should be looking for? I think the fact that it’s video based would help mum be able to implement 

[Quarter Note]

On 12/31/2023 at 7:28 PM, Lecka said:

But things can get better, I hope they will get better for him!!!!!!!

Lecka, your words lightened my heart.  Thank you, thank you, thank you for this encouragement.

@TechWife and @ScoutTN, thank you for your suggestion about the residential treatment programs.  My state has very, very few resources like this.  There is a day-only program about 45 minutes away from us, but, due to our geography, that needs to be last-resort-only.  

But the main thing about not sending him away is what @PeterPan noted:  anxious ASD kids need to feel safe.  It seems cruel to send my son away from his "safey".  That may also be why the homeschool-to-public school transition was so hard on him - public school was in no way safe for him.  (By the way, PeterPan, he does have a weighted blanket, though he probably needs a heavier one by now.)

21 hours ago, PeterPan said:

The only thing you can change quickly is *yourself*.

That's the hard thing.  PeterPan, over the years I've tried most of the resources that you've recommended above.  At this point, I've lost all authority with him for any new curricula, because he has "real" teachers now.  😞  But I am interested in the Easy Button and Power cards ideas.  

 

21 hours ago, PeterPan said:

In that moment I knew that *I* could step up my game and learn things to help me do better.

Oh wow, yes.  Thank you for this example.

[Quarter Note]

16 hours ago, PeterPan said:

"Let's solve this together. Let's find a safe solution together. We need to do this together safely."

This is our goal.  The fact that you're there now gives me hope.

[Quarter Note]

OH, I completely forgot something that I wanted to tell all of you.  Early yesterday morning when I was reading on the couch, my son came out and lay down next to me and just put his head in my lap for about twenty minutes.  There was nothing more important at that moment than just encouraging him to be his sweet self with me, with him telling me about how cute furry animals are, etc.  There is a great boy in there, and I need to keep that in mind.  

[PeterPan]

13 hours ago, Ausmumof3 said:

@PeterPan

I found this resource which is local to me

https://studentwellbeinghub.edu.au/educators/topics/interoception-and-self-regulation/

 

is this the kind of thing that I should be looking for? I think the fact that it’s video based would help mum be able to implement 

Good find! I can tell you on Kelly Mahler's fb group for interoception that people have been hopping talking about the aussie resources and work being done there. Kelly's stuff is top notch but it's not free. She has a full curriculum to make it easy for the parent or therapist to implement and online ondemand training. I HIGHLY recommend her materials. 

So I think you'd just look through the free materials you're finding and see if they're enough for your situation. I think the thing to notice is the target demographic. If something is being written for gen ed teachers to use in a diverse but mainstream classroom situation, that's really different (for a starting point, for need for explicitness and supports, etc.) from working with ASD, language issues, etc. etc. So something could be GOOD but maybe good for one setting and not quite what the most powerful tool in another.

It's like good reading instruction is good reading instruction, but when we get to dyslexia we're going to go into a lot more detail and leave nothing to chance and fill in itsy bitsy holes that other people get intuitively/naturally. 

Edited January 3 by PeterPan

[PeterPan]

13 hours ago, Ausmumof3 said:

@PeterPan

I found this resource which is local to me

https://studentwellbeinghub.edu.au/educators/topics/interoception-and-self-regulation/

 

is this the kind of thing that I should be looking for? I think the fact that it’s video based would help mum be able to implement 

i'm looking through this quickly and it's definitely good stuff. So I'm clicking on one lesson, just to see how it's developing, and it says Activity 2: Feet. They give you *one* activity. It's GOOD STUFF, but it's one activity. If a teacher does that in a mainstream class, it's going to be brilliant. With the Interoception curriculu from Kelly Mahler you're going to have printables for the body part, vocabulary for the body sensations at three different levels of language, printables to make a folder they can use to body scan using the vocabulary (because language often comes with language issues). And they're going to have more like *20* activities for that one body part. She has other resources to give people in more ways to explore.

So it's like OPGTR vs. Barton/OG, kwim? Both are great, but they're different target markets. I literally had to go through all the sensory words in the curriculum with my ds and help them have meaning. And we had to do ALL those activities. One thing, no vocabulary instruction, that just wasn't my ds' starting point. My ds is ASD2 with language issues, so even at 10/12 we were putting meaning to words like hot/cold/warm/cool, etc. We spent hours upon hours making each word have experiential meaning for him so words connected to experience. 

Kelly talks about the idea of *inviting* people to explore their bodies and try activities. They can do this because they have such a diverse menu of activities for every body part. That would be overkill in a mainstream classroom but it's *essential* for a more intensive, therapeutic setting.

So it's great stuff the aussies are putting out and I love that they're doing it! I love that they're bringing it into their mainstream classrooms, building common language, catching kids who maybe don't have an IEP but need some help. I LOVE that they're doing this. There's also a place for therapy level materials that are much more detailed.

Edited January 3 by PeterPan

[Ausmumof3]

7 minutes ago, PeterPan said:

Good find! I can tell you on Kelly Mahler's fb group for interoception that people have been hopping talking about the aussie resources and work being done there. Kelly's stuff is top notch but it's not free. She has a full curriculum to make it easy for the parent or therapist to implement and online ondemand training. I HIGHLY recommend her materials. 

So I think you'd just look through the free materials you're finding and see if they're enough for your situation. I think the thing to notice is the target demographic. If something is being written for gen ed teachers to use in a diverse but mainstream classroom situation, that's really different (for a starting point, for need for explicitness and supports, etc.) from working with ASD, language issues, etc. etc. So something could be GOOD but maybe good for one setting and not quite what the most powerful tool in another.

It's like good reading instruction is good reading instruction, but when we get to dyslexia we're going to go into a lot more detail and leave nothing to chance and fill in itsy bitsy holes that other people get intuitively/naturally. 

It’s tricky

Its not my personal situation just trying to help someone else as much as I can. They’re not someone who can read a lot or implement really complex stuff, however does work with professionals which help somewhat. 

[PeterPan]

Just now, Ausmumof3 said:

It’s tricky

Its not my personal situation just trying to help someone else as much as I can. They’re not someone who can read a lot or implement really complex stuff, however does work with professionals which help somewhat. 

A lot of people are in this situation, sigh. We make things sound easy here that are not in reality, lol. I hope they can get access to this type of intervention in the way they need. Some people end up getting very creative. I've talked with people online who buy the curriculum and ask a friend, a counselor, SLP etc to implement it for them. Maybe the free resources you found would be enough. 

I would encourage you that it does not have to be done *perfectly* to see progress. 

[ktgrok]

On 12/28/2023 at 9:33 PM, freesia said:

Get a wi-fi router and turn off his internet access. 
 

He needs to turn in his computer to you at bedtime. If you are afraid of him and so he can do whatever he wants that is not a safe healthy dynamic. He is being abusive. Your dh needs to step in. He needs consequences. There is absolutely no reason for him to stop doing exactly what he wants right now. 
 

He 100% needs to give you access to the computer. In my house, I would confiscate the computer until that happens. If he then in violent, I would deal with that. By placating him you are avoiding the fact that he is violent when he doesn’t get what he wants and you are not teaching him another way. He needs counseling and you need counseling to figure out how to make your way through this. 
 

Your dh can do his work another way (porting from a cell phone?). Why isn’t he helping with this?

 

none of this is actually practical in the kind of situation she describes. He will react as if she is taking away his ability to breathe. 

On 12/29/2023 at 10:19 AM, maize said:

The stark reality is that no human, even a parent, has actual control over the behavior of another human. 

Recognizing the limits of one's power in a situation isn't abdication of responsibility. It's recognition of reality.

So very very very true. 

[ktgrok]

years ago I posted on here about my son's internet addiction. What helped the most was finding him something else to fill that spot in his life. We did NOT take away the internet, but we did get him involved in volunteering with birds of prey at a rehabilitation center. I will swear always that that volunteer job saved his life. It gave his ASD brain something else to hyperfocs on - he learned SO much about birds! It also gave him a physical outlet - he was outdoors mostly, cleaning and building and exercising the birds. He also got a TON of appreciation and praise for his work - and it was immediate. Bird was hungry, he fed it, bird was full and happy. That immediate satisfaction and feeling of success was vital. 

We homeschooled, but that semester he really did nothing but volunteer and watch documentaries and read. And that was okay. He did do math at the center - had to calculate weight loss and gain of the birds down to the gram, then figure out how much to feed them (again, in grams) based on that, etc etc. But more importantly, he was safe and happy. 

As you likely have realized, depression in young men/boys looks like anger. I'm so grateful our neuropsych told us that, and we now know that an angry kid is a sad, depressed kid. 

Hugs. And yes, mental health comes first. Nothing else matters without that. Nothing. 

[PeterPan]

8 hours ago, ktgrok said:

As you likely have realized, depression in young men/boys looks like anger. I'm so grateful our neuropsych told us that, and we now know that an angry kid is a sad, depressed kid

I love all @ktgrok's comments here so much. I remember reading about her ds working with the birds but I didn't remember the connection to *why*. That's so wonderful. 

I wanted to tease apart something, because this comment about anger is so insightful. My ds has *always* been irritable. He was literally angry as a BABY. It was the weirdest thing to hear this small baby angry (angry that you were late, sort of a social injustice cry). He was dangerous at 5, 6, 7, all along, and his current psych diagnosis is "autism irritability." The teen instability/flux/challenges then piled on top of it.

So you can have layers to it like that. (long term stuff chemistry issues and teen hormone/instability issues).

Edited January 3 by PeterPan

[PeterPan]

8 hours ago, ktgrok said:

We homeschooled, but that semester he really did nothing but volunteer and watch documentaries and read

I love this. This is so just reality. Even with the meds to stabilize things, we've had to go so far. I get scared thinking about reporting to the IEP team and I keep trying to think how to frame this in some sort of accomplishment light. So far every year they've been really happy when he shows up stable, happy, safe, and they don't give me a hard time. I think it's the idea that a stable person is on track to become a productive person. A stable person is ready to learn, sigh. 

He's stable, his mood is positive, he's engaged, the direction is right. 

So just out of curiosity, does your ds still work those birds or did he move on from that? Just wondering. 

Edited January 3 by PeterPan

[Longtime Lurker]

On 1/1/2024 at 7:01 PM, PeterPan said:

This is the stuff I've done that has worked with my ds.

My ds is not non-verbal.

My ds is not ASD3.

My ds is not dealing with ID but in fact has a gifted IQ.

My ds is non-verbal.

My ds is ASD3.

My son is dealing with ID.

On 1/1/2024 at 9:53 PM, PeterPan said:

Before meds, it was pretty much drop language, de-escalate, give space. 

I have used this (in addition to meds) successfully so many times to stay safe and help my ds calm down. When he was very young, it seemed counterintuitive as if I were just letting him do whatever he wants, but I realized many years ago that he was in fight or flight mode and needed my help. 

@PeterPan, I am in awe of the lengths you have gone to to help your son and, at the same time, I recognize that I have gone to similar lengths myself. My ds is now 25. On his 25th birthday, I remember thinking, "We have kept him safe and learning and mostly happy for 25 years. What an accomplishment!" However, in 6 months he will age out of school in my state and the 6 hours a day he spends in a wonderful special ed school will end. Day programs in our area will not take someone with the kinds of challenges my ds still has so we are working on building something from scratch while also seriously considering a residential home two hours away where we would only see him on weekends. This is so, so hard, but as we get older, we are trying to make transitions while we can help him through them. At this program, he would qualify for 1-1 care and an individualized schedule, which is great. But still...

[PeterPan]

54 minutes ago, Longtime Lurker said:

This is so, so hard, but as we get older, we are trying to make transitions while we can help him through them.

And I agree, what you've done is AMAZING!! I can tell you my mom had a talk with me a year ago, sort of the mom talk, and she's like here's the thing... And she had a friend who made the hard decision you're looking at LONG before it was super absolutely necessary. It gave them their peace and it *more importantly* let her dc make that transition at a non-stressful time. It would be SO stressful to lose your family member, your support, AND change where you're living. And their decision was, as you're facing, to let the person make a move now, make it peaceful, make it good.

So I'm so sorry it's hard. She was telling me to bone up in my mind that we need to be honest about that and not hold on. Our marriage needs it and he needs it. But I get that it would be horribly hard.

You know, the thing that blows my mind about ASD3, nonverbal, the super hard situations, is the LOVE people surround them with. I think that is a big win when someone is calm and at peace and working well in their environment. I love what you've accomplished. I had an adult cousin, someone many years older than me, who functioned similarly and was born that way. It was long before they called it autism, so they used other words (R---). But that was how his days rolled, with daytime activities and being surrounded by people who cared. He passed unexpectedly and I'm not sure why. I think they said it was his heart? Like he was literally at the fair, eating fun food, and he was gone. 

So you never have tomorrow or guarantees and I don't think you have to worry about that, kwim? Just make each day good and that's good enough.

Edited January 3 by PeterPan

[kbutton]

3 hours ago, PeterPan said:

He was literally angry as a BABY. It was the weirdest thing to hear this small baby angry (angry that you were late, sort of a social injustice cry).

I don’t have kids with these support levels, but gosh yes. And trying to explain this to people was impossible and made people think I was crazy. If he was calm and I knew he needed to eat, he would not eat, but then thirty seconds later, he was irate because I hadn’t fixed his hunger yet and so indignantly inconsolable that he could hardly eat. As a neonate! Multiplied by diapers (a tablespoon of wet and that diaper had better be off yesterday) and everything else he experienced. 

[Spryte]

45 minutes ago, kbutton said:

I don’t have kids with these support levels, but gosh yes. And trying to explain this to people was impossible and made people think I was crazy. If he was calm and I knew he needed to eat, he would not eat, but then thirty seconds later, he was irate because I hadn’t fixed his hunger yet and so indignantly inconsolable that he could hardly eat. As a neonate! Multiplied by diapers (a tablespoon of wet and that diaper had better be off yesterday) and everything else he experienced. 

Oh, wow. This resonates. I’ve been there, too. I have never heard anyone else describe this, and it’s such a relief to hear. 

This thread is such a huge help and comfort to those of us just reading along. Thank you, OP, for starting it, and to all posting here.

[ktgrok]

6 hours ago, PeterPan said:

I love this. This is so just reality. Even with the meds to stabilize things, we've had to go so far. I get scared thinking about reporting to the IEP team and I keep trying to think how to frame this in some sort of accomplishment light. So far every year they've been really happy when he shows up stable, happy, safe, and they don't give me a hard time. I think it's the idea that a stable person is on track to become a productive person. A stable person is ready to learn, sigh. 

He's stable, his mood is positive, he's engaged, the direction is right. 

So just out of curiosity, does your ds still work those birds or did he move on from that? Just wondering. 

He does not, only because he got a full time job working at a veterinary hospital. Then when we moved it was too far away. But he still loves birds! We have a feeder and go on hikes where we can see them, and he teaches his younger siblings about them. Right now his thing is mountain biking - another good physical, outdoor outlet!

3 hours ago, kbutton said:

I don’t have kids with these support levels, but gosh yes. And trying to explain this to people was impossible and made people think I was crazy. If he was calm and I knew he needed to eat, he would not eat, but then thirty seconds later, he was irate because I hadn’t fixed his hunger yet and so indignantly inconsolable that he could hardly eat. As a neonate! Multiplied by diapers (a tablespoon of wet and that diaper had better be off yesterday) and everything else he experienced. 

Yes. And before I knew all kids were not like this i was flabbergasted by the whole "let them self soothe" advice I wold hear and read about for babies. Surely these people were lying to me, because there was NO WAY he'd self soothe - he would just escalate! I had to have another baby a decade later to learn not all kids were like this. 

[kbutton]

2 hours ago, Spryte said:

Oh, wow. This resonates. I’ve been there, too. I have never heard anyone else describe this, and it’s such a relief to hear. 

This thread is such a huge help and comfort to those of us just reading along. Thank you, OP, for starting it, and to all posting here.

@PeterPan’s phrasing of anger and injustice just really hit the mark. It’s completely different from just cranky baby. 

It is a fantastic thread. I definitely bump into people now and then who need *more* than we did, but at the same time, there are overlaps. I try to bookmark stuff that works for people in case I can share it. We needed some of this but at a different age with different implications and options, or we needed just a framework from the different areas, so seeing in depth information on the same problems makes sense and reminds me to still not take things too much for granted—there are still going to be quirks and needs that arise.

 

[PeterPan]

1 hour ago, ktgrok said:

he got a full time job working at a veterinary hospital.

That's amazing!! I didn't realize that had happened. What a wonderful way for it to come together and how good that he can work full time.

[PeterPan]

1 hour ago, ktgrok said:

And before I knew all kids were not like this i was flabbergasted by the whole "let them self soothe" advice I wold hear and read about for babies. Surely these people were lying to me, because there was NO WAY he'd self soothe - he would just escalate! I had to have another baby a decade later to learn not all kids were like this. 

Oh my lands, I can STILL remember sitting in church and this woman SWEARING I was ruining my dc by responding to dc. And what I was doing was RIGHT but this person was using the persuasiveness of RELIGION to tell me it was IMMORAL to listen to my mother intuition!!! The way people twist the church and twist God, in their completely uninformed ignorance and NT biases, is just astonishing. Just because their dc survived xyz doesn't mean it won't harm mine. 

Don't even get me started on spanking, the thing that really, really could not be with my ds, oh my. And the church the whole time implying there's ONE WAY to do things. 

I get now why people change denominations midlife, because they just get fed up with the harm they've been dealt.

[ktgrok]

6 minutes ago, PeterPan said:

That's amazing!! I didn't realize that had happened. What a wonderful way for it to come together and how good that he can work full time.

To be fair, he's now working right now. When we moved it became too far of a commute, so he helped DH replace all the flooring in the old house, paint it, etc and does a lot around the house here for me. He's always running errands for me or whatever. And he JUST applied for the local college!!!!! That's HUGE. Now, he hasn't registered for classes yet...but baby steps, lol. Once he has some classes (and they have all sorts of weird off schedule ones so I think he can get in something soon) he will find a job again - wants to know his class schedule first. He has also recently started spending time with friends out and about - he bought a mountain bike used and is riding it a lot, having bonfires with friends he met while homeschooling, etc. So, doing better. The move was a bit hard on him - he lost that support system at his job, and I didn't really fully recognize that problem when it happened. Plus new house, etc etc of course.