ASD, internet addiction, and PS-issued Chromebook

[PeterPan]

7 minutes ago, freesia said:

However her getting hurt is the actual thing happening; his getting hurt is theoretical.

Sorry to nitpick, but I'm trying to make sure I understand. 

She said

-He is aggressive. 

-He will fight her when not getting his way.

The former is threatening and very traumatic, absolutely, but you can walk away and de-escalate. The latter happens because you did not de-escalate.

There are SO many ways to walk away and de-escalate and still stay in control. I'm not being insensitive, because I've lived it. If she keeps doing the same thing, she'll keep getting the same result. You have so many choices and tools, but you have to learn about them and use them. 

-drop language

-drop demands

-defer demands

-recognizing patterns to when/where this behavior occurs and head it off

-decide not to enforce xyz

It's very hard to stay rational when you're being threatened. It's literally trauma because you are in danger. The counselor taught me trauma release techniques and every time my ds is violent or threatening, I do them to release that tension. It's just very hard to see the rational options you do have to de-escalate or prevent when you're dealing with your own stress reaction.

[Pam in CT]

Re stigma, calling, and labels

Just now, Lecka said:

I can’t say what is true for everyone everywhere, but I think there are people who have a heart and a calling to work with kids with ASD of all kinds, and that is where their heart is.  I think there are also people who have a heart and a calling to work with kids who would be classified as ED.  
 

I think there are times people feel like “they can do this but not that” for various reasons.  But I don’t think that there is automatically more stigma for one diagnosis or another.  I really don’t think that is true.  
 

I think there are people who are fair and non-judgmental and honestly enjoy the challenges and joys of working with all kinds of kids.  
 

I think what category to be in should be based on where a child would be best served and the honest opinion of people making that determination.  
 

I think that in general, I don’t know what would be best in this situation. 
 

My son has been in the programs where people say “keep your kid out of that program.”  Guess what, it’s the right fit for some kids, and some kids it’s true shouldn’t be in a “one size fits all by diagnosis” situation.  But putting a stigma on kids in a program by saying “keep kids out of that program, it’s the stigmatized one” can be something that is not a good way to make a decision.  

The first time I met an IRL person whom I recognized as an actual angel walking this earth was the then-director of CT's publicly funded residential school for deeply troubled kids referred out by public school districts that -- usually after several years of unsuccessful lesser-intensity efforts -- refer students with ED out, usually for 2-3 year residential placements.

[PeterPan]

10 minutes ago, Pam in CT said:

ED label

In our state ED is a lower funding tier. People with ASD fight to stay out of it because autism is the higher funding tier.

There's a really good video on violence in kids btw. I can't remember the name but it profiles several boys. I watched it, identified with it, and then decided to pull up my boot straps and learn more. I concluded that even residential does not solve the problems. It can be a good thing and thing people do, absolutely, so I'm not saying not to do it. At some point though someone has to address the deeper issues. The hard part is learning what those are so you can advocate.

[freesia]

2 minutes ago, PeterPan said:

Sorry to nitpick, but I'm trying to make sure I understand. 

She said

-He is aggressive. 

-He will fight her when not getting his way.

The former is threatening and very traumatic, absolutely, but you can walk away and de-escalate. The latter happens because you did not de-escalate.

There are SO many ways to walk away and de-escalate and still stay in control. I'm not being insensitive, because I've lived it. If she keeps doing the same thing, she'll keep getting the same result. You have so many choices and tools, but you have to learn about them and use them. 

-drop language

-drop demands

-defer demands

-recognizing patterns to when/where this behavior occurs and head it off

-decide not to enforce xyz

It's very hard to stay rational when you're being threatened. It's literally trauma because you are in danger. The counselor taught me trauma release techniques and every time my ds is violent or threatening, I do them to release that tension. It's just very hard to see the rational options you do have to de-escalate or prevent when you're dealing with your own stress reaction.

Yes, I agree with you. I have taught autistic children and used those tools (but also have scars on my arm from being attacked.) But right now she does not have the tools to de-escalate. I  concerned about her right now this minute. I am pretty sure she did say he has hurt her. 

[PeterPan]

11 minutes ago, Hilltopmom said:

In my area, calling the ambulance/police would be the only way to get the child admitted to inpatient mental health treatment. That’s why I suggest it as an option after discussing it with your providers(make a safety plan).

Interesting. In our area we have a children's hospital with their own ER and intake process. Not saying it doesn't have issues. That would just vary by the area.

For op, these are conversations I had with our county board of disabilities. I sat them down and asked who I talk with, what I ask for, who pays for it, how do I get funding. So that's another resource to be talking with. 

[freesia]

2 minutes ago, PeterPan said:

In our state ED is a lower funding tier. People with ASD fight to stay out of it because autism is the higher funding tier.

There's a really good video on violence in kids btw. I can't remember the name but it profiles several boys. I watched it, identified with it, and then decided to pull up my boot straps and learn more. I concluded that even residential does not solve the problems. It can be a good thing and thing people do, absolutely, so I'm not saying not to do it. At some point though someone has to address the deeper issues. The hard part is learning what those are so you can advocate.

Residential placement does solve the problem of keeping the other people in the house safe particularly in a case where the parents are exhausted and depressed. I am constantly amazed at your energy and creativity in figuring things out for your family. Not everyone is in your place. Suggesting that your way is the only right/best way may only keep them stuck and in a place where there child doesn’t get the help he needs. 

[PeterPan]

1 minute ago, freesia said:

Yes, I agree with you. I have taught autistic children and used those tools (but also have scars on my arm from being attacked.) But right now she does not have the tools to de-escalate. I  concerned about her right now this minute. I am pretty sure she did say he has hurt her. 

Ponder this. If she's getting hurt, are there other adults in the house? Are they supporting her? Are they helping problem solve? Are they part of the problem? I'm just being realistic. It's not like this happens in a vacuum.

I'm pissy about safety. There was a point where I drew a line in the sand a couple years ago, made a demand that was necessary for safety, and told the other parent this happens or I walk. 

So it's ok to make demands, it's ok to walk. It's also the case that a lot of people are dealing with complex situations and it's not just the kid who is making it hard. 😉

[ScoutTN]

22 minutes ago, PeterPan said:

Bingo. I cannot control the outcomes my ds chooses for himself over the course of his lifetime. I *can* control what interventions I try to bring to him to get into his head. And the school system still is not doing enough of what is up to date and known that could be done. 

Yes, and with a minor still living at home, we can have influence (not control) that will not be as possible later. Use the window of time that you have!

[freesia]

Just now, PeterPan said:

Ponder this. If she's getting hurt, are there other adults in the house? Are they supporting her? Are they helping problem solve? Are they part of the problem? I'm just being realistic. It's not like this happens in a vacuum.

I'm pissy about safety. There was a point where I drew a line in the sand a couple years ago, made a demand that was necessary for safety, and told the other parent this happens or I walk. 

So it's ok to make demands, it's ok to walk. It's also the case that a lot of people are dealing with complex situations and it's not just the kid who is making it hard. 😉

I’m not completely disagreeing with you. I actually do agree with you. I’m just suggesting that making her feel like she can’t call the police is not kind to her in the reality she is right now. 

[PeterPan]

4 minutes ago, freesia said:

also have scars on my arm from being attacked.

Think about our system that stresses kids and up prioritizes things that do not lead to regulation and are not important long term and then don't get done what is necessary.

Right now we're going into the hardest, darkest part of winter. If the behaviors are increasing, this dc could have lower D levels. D stabilizes mood by pulling down methyls, which stabilizes dopamine, etc. So think about what happens if you drop demands and get them outside or go take a break and drive somewhere sunny for a couple days. 

[PeterPan]

2 minutes ago, freesia said:

not kind to her in the reality she is right now. 

I have suggested multiple safe alternatives.

-Leave and take a break. Get away for several days. Take no one with you and just go. Stay with a friend, a relative, at a hotel, wherever you want.

-Get trauma counseling and learn trauma release techniques.

-If the dc will leave the house, drop demands and go to a sunny place for a refresh. When I reboot my ds like this, I take him to a place with sun and no wifi. 

These are things I do.

[NorthwestMom]

Hi OP, I am a BCBA who works with kids with autism and I have definitely worked with families like yours. Is your son receiving ABA treatment? If so your BCBA should also be providing parent support to you and should be working closely with you on this. Self regulation, responding to negative statements and events, and tolerating delays are all behavioral goals we would work on cases like this. I am sorry you are going through this and I can tell how exhausted you are.

You have gotten some excellent advice from posters like Peter Pan and Freesia. Your situation is complex, and what will work the best can be affected by factors outside of your control. For example, it sounds like your school district is difficult to work with and are trying to placate you with the minimal amount of services they can offer. You definitely need an IEP (I suspect you have a 504 plan, probably not enough on there to help you) and I recommend you request one in writing ASAP. If your child ultimately needs a residential placement paid for by the school district he will likely need to try multiple less-restrictive placements first (for example, it might look like para assistance in general education classroom, then separate special education classroom, then alternative school in same city, etc). Again, if you are working with a BCBA, they can also attend IEP meetings and advocate for services your child needs. 

Whether or not to call 911 can be affected by multiple factors. Ultimately, if anyone is at imminent risk of physical harm you should call, but it can also potentially make the moment worse. Some police will not have the skills to work with people with autism or other disabilities. You might want to visit the local police station without your son and talk to an officer to see what they recommend. My local children's hospital is at excess capacity for kids with autism and severe problem behaviors, so a local parent calling 911 would likely not result in an inpatient stay. However, a record of 911 calls might be helpful as documentation to move you up on waiting lists for services.

Hugs to you and please ignore anyone who is trying to make you feel bad about your parenting. They have NO idea what you are going through. 

[Quarter Note]

My husband and I just read through every single one of these posts.  So many of you had very helpful things to say.  These two tired but very loving and well-intentioned parents thank you from the bottom of our hearts.

I'd like to respond to many of these posts individually, but I think that I need to step away for a little while.  But I do want to say three special thank yous:

@PeterPan and @maize, you two are absolutely wonderful.  Thank you especially for your supportive posts.

@Pam in CT, you are one of the most thoughtful posters on this forum.  I really appreciate your carefully-thought out posts about the school-related issues.

Be back later after I've had a chance to heal.

[maize]

@Quarter Note there is a poster in this thread who does not understand your reality and is bullying you inappropriately.  I strongly recommend putting that poster on ignore. You have the right to establish that boundary for yourself.

Thoughtful disagreement can sometimes be a good thing,  it helps us consider things from different perspectives.  Denigration of others whose shoes we do not walk in is an entirely different beast.

You've done well to not engage.

Edited December 30, 2023 by maize

[Mrs Tiggywinkle Again]

57 minutes ago, freesia said:

Your plans are good ones. I am pretty sure people are recommending the police bc she is in actual danger from this child. While she’s getting the meds sorted, she needs to know she can do this. She does not have to be beat up bc she’s afraid of what the police will do to her child. She not getting hurt is as valid as her child not getting hurt. However her getting hurt is the actual thing happening; his getting hurt is theoretical. Telling her not to call only adds to her fear and guilt. 

It is truly the only way to get help here.  Police don’t do mental health transports; if you call the county crisis team they will call the police and the ambulance. The ambulance will transport to the ED, but only after everything has been declared safe by the police. And then you go to the ED where the kid is stripped, put in a paper outfit, has everything removed from their possession, and then sits in an overstimulating ED room for days and weeks on end while an open pediatric psych bed is located. It is often a 4-6 hour drive away, again by ambulance, and it’s very difficult for many families to be part of the hospitalization process due to distance.

There are no children’s hospitals with psych teams within any kind of driving distance, so unless you’re able to drive a raging, aggressive teen yourself to the local ER, 911 and police are the only way to get there.  And it is really the only way to get any real long term help or community supports.

My 13 year old ASD son is definitely addicted to screens.  He lost his kindle and laptop a while ago because he was part of a discord chat with his school friends that took a nasty turn into racist and sexual jokes.  He had apparently changed the passwords and refused to give them to us so he lost them. His phone shuts off at 7 pm or with two hours of use, and is monitored closely with Bark. But he is bored, listless, and even after a month cannot figure out how to manage his time without screens. He’s sleeping a huge amount out of boredom. He’s become aggressive a bit but only tried to put his hands on his dad or I and figured out quickly that wasn’t going to end well for him.  Dad and I work full time, there are no extracurriculars to participate in in his special needs school and his only interests are dogs, so I am struggling with how to fill his day and not sleep all the time he isn’t in school.

it is a huge problem, especially with the amount of screens in school.  I wish screens would be recognized the same way as other addictive things, and schools would treat it accordingly.  I agree you need an IEP advocate and get it into his IEP that he doesn’t get a Chromebook.

[maize]

My own family's experience with screens has been not exclusively negative. When one of my kids was almost completely incapacitated by OCD, screens were a blessing--they were the one way he was able to distract his brain from the constant intrusive thoughts. It was genuinely healthier for him to spend many hours a day playing online games of Magic the Gathering than to be stuck in an endless loop of rumination inside his head.

Talking with chatGPT has been a helpful educational tool for another child with ASD and severe dyslexia. He gets conversation practice in a low-pressure environment combined with reading and writing practice.

There is absolutely a minefield involved, however. Risks of addiction, risks of harmful content, risks from ill-intentioned people. Such a double-edged sword to have integrated into our lives at every turn.

[Lecka]

This is such an aside, but I had 3 kids at the same elementary school….. one time I heard “we can’t do that” said by a teacher and…. it was something that was being done in the school!!!!!!!!  
 

Because of privacy rules and also just — schools being places where everyone does not know what everyone else is doing — a teacher or even a counselor may not know what is available in IEP meetings or programs that are not what they do.  
 

Ime the administrator who is trained and focuses on IEP meetings that may be more complex — may be a vice-principal.  
 

It used to surprise me but now I’m not surprised — privacy and specialization explain a lot!  

[Kanin]

1 hour ago, pinball said:

Good to know you support her in doing nothing, too

 

If you read PeterPan's replies, you'd see that's she's offering many ideas of what to do, none of which are easy to do. 

QuarterNote was venting and being honest about emotions. Just because someone is in despair and wants to give up, doesn't mean they will give up. This is an anonymous, online forum where people can be free to share their true emotions and get support from people who have been there, done that. 

I haven't been there, done that, but I do work in the special education world, and there are lots of kids that I like and care deeply about, but I would not want to live with day in, day out. I know that I just see the tip of the iceberg at school. 

[AmandaVT]

2 hours ago, PeterPan said:

I would fight ED and push for ASD as the disabling condition. Every provider is reading that IEP and ED => willful. ODD, same deal. Push against labels like that and fight for ASD. Do not let them imply your dc is merely "bad" and that if he would comply the problems would be solved. He has deep neurological differences and chemistry issues that have to be addressed. 

I'm a special educator and agree with this. Also, in my state (and I'm guessing others?), an ASD diagnosis is a path to more services, especially adult services. Respite, job training and support, etc. The team has to look through the lens of "which disability is limiting access to the general education curriculum and causing the behavior." In this case, ASD seems like "what came first." Our school psych does a nice job guiding the Eval team (which ALWAYS includes the parents) in making the decision as a team and explaining things to the team. 

If your meeting focused on accommodation and not services, I'm guessing you had a 504 meeting, not an IEP meeting. So formally requesting an IEP evaluation would be a good next step. 

[Kanin]

36 minutes ago, AmandaVT said:

If your meeting focused on accommodation and not services, I'm guessing you had a 504 meeting, not an IEP meeting. So formally requesting an IEP evaluation would be a good next step. 

Yes, and if your DS is getting poor grades from not doing homework (and maybe not doing classwork, too), that would be a reason to be evaluated. I'm guessing, also, that if he's very challenging at home, he displays a lot of that behavior at school too - which is why you had the 504 meeting.

In my district, if a parent requests an evaluation, it always happens. Feel free to tell the case manager that you have no clue about the IEP process and are totally confused and stressed, and hopefully they'll hold your hand throughout the process. I hope you get a great person to be the case manager, who can see and appreciate all of the great things about your DS ❤️ 

Shorthand -

A 504 plan is basically a medical-ish plan that gives a student accommodations. The accommodations can be things like taking breaks, preferential seating, modified assignments, etc.

An IEP provides both accommodations AND specially designed services. The specially designed services can be academic (reading, math, etc), behavioral, executive functioning, social work, speech-language, occupational therapy, and more. You can also get BCBA (board certified behavior analyst) services through an IEP. The BCBA can also provide a plan to use at home. 

It sounds to me like your DS would benefit from social work services, executive functioning skills instruction, and a plan from a BCBA. At school, I provide executive functioning skills instruction - things like task initiation, sustaining attention on a task, transitioning between activities, organization of binder/locker/desk, using a planner, things like that. A lot of my students with ADHD/ASD get what's called a "supported study hall" each day to get organized and get work done, and work on the executive functioning skills.

There's a lot of good that can happen with an IEP!

Edited December 29, 2023 by Kanin

[Kanin]

1 minute ago, Kanin said:

Sorry, don't know how I accidentally quoted this!

 

Edited December 29, 2023 by Kanin

[Dmmetler]

You may not be in the emotional space to do research, but if you have a friend who is, or if you can access advocacy services, look into what other districts in the area have. It may be, especially if there's a large city, that there would be a better fit, and getting him into a school which doesn't stick him on screens all day would probably help at home, too. An out of district placement in a different public school tends to be much easier to get than a placement in a private school. Some large districts even have in house residential programs where kids are picked up from home on Monday and brought home on Friday-I know the one in the district I used to work at found that most parents could handle the weekends with the respite during the week, and it was easier to keep the kids emotionally stable with fewer transitions. 

 

 

[Quarter Note]

Hi everyone.  Just wanted to come back to say a few more very specific thank yous.  I appreciate all the helpful suggestions, and I will miss a few people whose comments I really appreciate.  My husband and I are coming up with some plans of things to address before the next semester starts, with a few back-up plans as well.  So many more of you have chimed in to help me with positive, sympathetic support.  I really appreciate the support and encouragement!  This tired mom has a lighter heart than she did three days ago from all the wisdom shared on this thread,

I’ll update in a few weeks after we see how all this shakes out.  There really is a wonderful kid inside my son. 

Here are a few more specific thank yous that need to be said, though I appreciate all of the positive encouragement:

@NorthwestMom your post is a treasure.  Thank you very much for sharing your thoughts as a BCBA.  We have just started working with a BCBA (only two visits so far), and your post gave me some ideas to share with my son’s BCBA and the language to use.  Your encouragement, as someone who has seen families like mine, means a lot!  I’m so glad that you jumped in and posted.

@maize, I’ve been pondering your words that “mental health takes precedence over academics” if we were to homeschool again.  That gives me some language to use with my son, because one of his big frustrations is the school’ pressure to get good grades.  It also completely ties in with @ScoutTN’s wise reminder to use the time of influence well.  Thank you both!

@PeterPan, your words about the importance of deescalation have really hit home.  It’s a fine line between walking away to calm down and “giving in”, but I think that you pointed out that there is a difference.  PeterPan, thank you for always being the one on this forum to remind us that our troubled loved ones can’t help their own chemistry, and that fixing the chemistry is foundational for lasting change.  Just so you know, we’re working definitely working on that one.

@freesia, please don’t apologize!  I hope that you didn’t think that my words about “don’t judge me” were directed to you - because they certainly were not!  In all honesty, those words were meant to head off a potential conflict with someone I had a run-in with on this forum a few years ago, but who hasn’t been on this thread, so it’s all okay.  On the contrary, I remember how warmly you encouraged me several months ago I another thread to support my daughter in this hard time of her life, and I still thank you for your encouragement!

@Lecka, I didn’t say this earlier, but I should have:  I really appreciate all your posts walking me through questions about the situation, and your thoughts about what the school can change.  Thank you for being so willing to jump in!

@Kanin, your “shorthand” post about the differences between 504 and IEP was very helpful.  Thank you!  It also has given me courage to ask for the things that my son needs but that I didn’t know a school could provide (executive functioning skills instruction, etc.). Those things will definitely go in the written request!

@EKS, I’m going to use your exact words when I speak to the school about his Chromebook.  Thank you for giving me those words, and the courage to use them.

And to everyone else who wrote helpful, encouraging posts, a big thank you!

[PeterPan]

On 12/29/2023 at 12:10 PM, Mrs Tiggywinkle Again said:

even after a month cannot figure out how to manage his time without screens

Total aside, but one of the ways we bust through this is with cruising. I'm way too cheap to pay for wifi so the only things he can do on his phones are whatever is already on there (chess). One time I let him pay for the wifi and won't be doing that again. It just totally ruins the experience. He needs that COMPLETE BREAK. Other kids will prompt him to do things and the teen workers teach him how to do things. It's not a shock that someone with these issues can't organize their lives and make things happen. My dh basically assigns as a "job" things to get ds moving. Like he'll tell him (like a job, not optional) to go dig a ditch or go water plants or whatever. 

Also working on interoception helps. It's super hard to make a plan when you don't even realize what you enjoy or what makes you feel good. It's just this hole in the approaches we use that we want the end goal and don't fill in all the pieces necessary to get there. 

My ds still likes screens but he recognizes WHY now. He will sit and watch youtube because he's info hungry and doesn't solve that by reading. His SLPs use what he learns there as a way to make conversation, so he has this feedback that screens done WELL result in improved social. He's socially motivated (which can happen with autism, lol) so it's reinforcing. It becomes more reinforcing for him to watch something he can TALK about than it is to do some kind of video game that he can't talk about. And he is regulated enough that he can leave them. And he knows other things he enjoys and can be compelled/nurtured to pursue them. 

That's just the mix that is working for us.

Btw, lest someone think it is pretty I'll say I never let him have minecraft. So any time he gets super wacky bored, he starts into psycho rants asking why I won't let him have minecraft, how good it is, on and on. I did get the nintendo version from the library one time to let him play for a rental period. I've just never installed it on a phone or device. And that's a really hard line in the sand I drew that gets really ugly when he's in his psycho modes. Then he gets dangerous and then we go to our safety plan (de-escalate, give space, etc.). So it's not like I'm unsympathetic. I live there and there's this constant potential for him to grow a bit, have his meds a bit low again, and be in this place where we're right back there. It's why his support level is *2* not one. It's another thing for op to think about honestly. When these kids are high IQ, the tendency is to want to label them support level 1. Our reality has been SO much harder than that, not at all consistent with what you anticipate with a support level 1 kid. It's not just chemistry but his completely lack of awareness, cluelessness ,the literal support you have to offer. There's a naivity to him, a vulnerability, and then this thrashing out when he tries to problem solve.

So that's just a tidbit for @Quarter Note that for us getting that support level updated by a psych and having everyone on the team say yes, this is not a kid who 100% mainstreams, this is a kid who needs more support, this is not run of the mill, may seem semantic but it was also consoling. He is support level 2, he is not easy, it does not end. And he is wonderful at times and loving. He just needs more support than a level 1 person and we don't pretend it is otherwise.

Edited December 31, 2023 by PeterPan

[PeterPan]

13 hours ago, Quarter Note said:

one of his big frustrations is the school’ pressure to get good grades. 

Fwiw, one of the things I've pushed back on with my team, with anybody who works with my ds, is that WORDS MUST HAVE POWER. If he's telling you he's stressed, that's AMAZING. But why self advocate if his words have no power and nothing changes? We had a behaviorist (social worker, awesome) in years ago and she was so helpful. But it's easy to get in these situations where professionals decide and our kids comply. What we're *wanting* is the inverse, self awareness and self-advocacy leading to self-regulation. For that to work, we have to shift our mindset from compliance (which has a place and helps with safety) to collaboration. The school system pays lip service to this, saying they can go to their IEP meetings.

This does not mean the dc:

-takes other perspectives or realizes other people's perspectives about the situation

-knows how he feels

-knows what would make him feel better

-is showing flexibility in their problem solving

etc.

So it's not like we just pander and do some brainless ask kids what they want and trust them to know and say "Well I ASKED you..." It's more that we ponder how we get them there. How do we improve their self awareness leading to others awareness so they can realize our perspective and theirs so they can collaborate and be flexible and problem solve together?

That's what you want to get to.

[Lecka]

I think it’s very positive to be starting ABA and medication.  
 

My son had a very beneficial experience with ABA and I benefited hugely, monumentally as well.  
 

I am new to medication, and I am having a learning curve with knowing what symptoms to look for to think there’s a need for a change.  It’s a different situation, but it has been a learning curve and I have not known what to look for.  I have been missing things and I am only just now feeling like I’m identifying things to look for in the future.  Which is good!  But it is a different situation, it is a known 95%+ medication issue with people who can say insightful things about their own experience.  
 

Here are my thoughts….  How and what are you going to track, in order to keep records and know if ABA and/or medication is effective or not, and what is going on.  It is not easy.  It is very hard to keep track of a gradual decline that is, in fact, progress.  It is very hard to remember what was going on 2 months ago.  
 

So I have not had ABA and medication for the same child.  However, my son’s ABA did help with tracking medications for children who were doing medication trials!!!!!!!!  Tracking in the sense of “is this working, what effect are we seeing.”  Or, if there is some kind of tracking being done for ABA, you can mark on the dates “started this medication this dosage.”  It depends what is going on what kind of tracking ABA might recommend, but I think they can be a major resource in record-keeping, or at least can help to know how to show both things on records.  
 

I have only recently started keeping a notebook with medication, dosages, and things I notice.  I have not been contributing, it has been — the psychiatric nurse is the one driving everything and knowing what to ask and what to notice.  Well, that is going well.  But I need to be contributing as well, it would be better.  Anyway — I have thought “I don’t know, I don’t notice, I don’t know what to write down.”  But over time and with finding out what kinds of things other people look for and notice — I am doing better.  
 

Anyway, I am working to include medication/dosage, notable events (that may turn out to be notable or not — but things that “could” be notable, or just things that are going on).  Then things I notice.  
 

The thing is that it can take time for things, and it can be hard to know if there’s a gradual change or not.  And then it’s awkward to not know!  It’s also disappointing to know — well, if I knew, we would have a lot more clarity, but I’m vague and not able to provide the information.”  So part of that is just part of the process and a major learning curve and learning process.  But it’s still something that I think is worth trying to make a priority or just trying it out and seeing if there’s a system that will work.  There might be a form you can fill out, ABA might make you a form of some kind, you might keep a notebook/journal…. This is also where it can help to put down events (that might be stressful, etc) and be able to see “does it seem like this event is stressful and causing an issue” or can you see “well it’s stressful but it doesn’t seem like it’s making a big difference.”  This is something that has been hard for me to tell, too.  On the other hand, if there’s something stressful and one week later things are declining, that can be seen from tracking.  
 

I definitely feel like I have had amazing experiences with ABA looking at my records and being able to notice things that are really helpful!!!!!!!!

 

It can be hard (or not appropriate) to make too much out of one day or one week, that could just be a fluke, but over time, it can be really helpful.  
 

And then I think sometimes it’s just not so hard to tease things out and/or it’s easier for people to notice, and then it’s less important.  But still it would be good to have a broad record, because a year from now someone could ask about something being tried now, and it does get hard to remember.  

[PeterPan]

1 minute ago, Lecka said:

 Anyway — I have thought “I don’t know, I don’t notice, I don’t know what to write down.”  But over time and with finding out what kinds of things other people look for and notice — I am doing better.  

That was one of the big eye openers for me, that I thought they had some mysterious process but really they just have these sort of litmus tests, flags, things they note. And it's linear (x is happening which usually means ______, y is happening which usually means _______) 

I like our psychiatrist because she brings some extra things to the table. She's willing to refer off to other practitioners for specialized questions and she brings up those specialized questions. She's willing to collaborate and ask questions that get me to think and brainstorm with her. For the absolute hardest kids, this is so pivotal. Honestly, because my ds can be so hard anyway, I feared a MISTAKE more than I feared another day of the same. So she would do things like starting really, really small and giving me lots of flexibility.

4 minutes ago, Lecka said:

tracking medications

Yes, in the moment it seems so obvious and then you look back and can't remember. I write everything on an index card and put it in the medication bin. I write at the top the date (so his name, quarter/month/year) and I list out EVERYTHING he takes. My biggest worry? I die or am incapacitated and no one but me knows the plan!!!!! So I write it down. Every time it changes, I write it down. 

6 minutes ago, Lecka said:

it can be hard to know if there’s a gradual change or not.

My ds is a slow metabolizer on a lot of things but some kids are really fast. Op could run genetics (23andme) and download the data and see. She could learn about methylation status and be better able to predict medication reactions. It's all there in the data download from them to dig through. The genes involved in some of the meds are there. 

Anyways, my ds tends to be very sensitive to very small dose changes. We literally started with ¼ of the smallest tablet. And while I *can* look at him and mathematical parameters, at this point I look at ME. If MY stress is down ,he's doing well. It's just easy to justify things and ignore things and make excuses. (Oh he did that because xyz.) So I try not to do that. If he's a little amiss and MY stress is up, then it's an issue. 

I went to the doctor this year for my annual and he was BLOWN AWAY at how much healthier and happier I am. Getting the meds right has done that for us. So you can watch your kid, but you can also watch yourself. You don't have to make excuses like oh I can't pin exactly exactly what's wrong so nothing needs to change and just live with ax murderer in the house level stress. If your stress is still high, then things aren't right yet. Now that's assuming you take care of yourself, take breaks, deal with your own issues (need for meds, bloodwork for deficiencies, etc.). But my increasing stress due to his tick, tick, time bomb of things is definitely something I watch and a major clue that he has grown, things have changed. Sometimes their bodies grow and sometimes it's their minds.

[Quarter Note]

4 hours ago, PeterPan said:

minecraft

Funny you should mention this.  My kids were both on their Chromebooks, obviously playing a game together.  When I asked them what they were playing and they said Minecraft, I asked, "Isn't that not allowed on the Chromebook?  How did you get that?"

Their answer, verbatim:  "Through a loophole.  Everyone knows about it.  Even the school."

4 hours ago, PeterPan said:

WORDS MUST HAVE POWER. If he's telling you he's stressed, that's AMAZING. But why self advocate if his words have no power and nothing changes?

PeterPan, I can't even tell you how insightful this is.  I am going think a lot about how to give my son's words more power, rather than just his actions.

3 hours ago, Lecka said:

How and what are you going to track, in order to keep records

Lecka, this is convicting me (in a good way, of course), because I go through spurts of trying to write down behavior tracked with food and meds, but I also get overwhelmed, forget about it, etc. - then when we go in to the dr.  I have no idea what to say.  I will try to get back into a consistent habit with this.

[Innisfree]

16 minutes ago, Quarter Note said:

My kids were both on their Chromebooks, obviously playing a game together.  When I asked them what they were playing and they said Minecraft, I asked, "Isn't that not allowed on the Chromebook?  How did you get that?"

Their answer, verbatim:  "Through a loophole.  Everyone knows about it.  Even the school."

Minecraft provokes such strong feelings, which I understand. I know it’s a problem for some kids. But I just wanted to point out that two kids playing together, especially in a family where relationships can be so hard because of neurodiversity, is a fantastic thing. Minecraft was one of the best ways my kids were able to spend time playing together during the difficult adolescent years. The sandbox nature of the game meant they could each have their own worlds, they could visit each other’s worlds, they could build worlds together… it was gloriously open-ended, with a ton of room for creativity.

I know that isn’t what @Quarter Note was talking about. The school needs to accept responsibility for their devices, and parents need to be able to say that the devices are causing unacceptable harm. But sometimes, for our neurodiverse kids, kinda-sorta parallel play in a sandbox world is a good thing. Just think carefully about whether this particular use of a device is a problem. Maybe it is! But maybe not.

[Quarter Note]

1 minute ago, Innisfree said:

kinda-sorta parallel play

You are right, Innisfree, and I do recognize that.  Playing Minecraft together is about the best bonding time that my tow kids have with each other right now!  Policing their Minecraft playing is very, very low on my priority list right now.  

I just wish that they would do it in the same room instead of yelling across the house to be heard by each other! 😉 

[Innisfree]

2 minutes ago, Quarter Note said:

You are right, Innisfree, and I do recognize that.  Playing Minecraft together is about the best bonding time that my tow kids have with each other right now!  Policing their Minecraft playing is very, very low on my priority list right now.  

I just wish that they would do it in the same room instead of yelling across the house to be heard by each other! 😉 

Oh, wow! Yes, I was picturing it happening in the same room. 😳😁

[PeterPan]

1 hour ago, Quarter Note said:

they said Minecraft, I asked, "Isn't that not allowed on the Chromebook?  How did you get that?"

Their answer, verbatim:  "Through a loophole.  Everyone knows about it.  Even the school."

Wow. It has always been that way I guess, with the kids outthinking the adults on tech, lol. 

 

[Lecka]

Honestly I hope the behavior issues around the laptop can be resolved, so that it can be something used in a positive way.  But how to get there!!!!!  If he needs major limits to get there — it is what it is.  My son had major issues around controlling the tv, and we never quit watching tv, but it was rough.  It was the number one thing going on for a while, trying to get him to where he could end his turn and have it be a sibling’s turn to pick what to watch, was a major issue.  But it was the biggest/hardest issue (of that type) and when it was better with tv, it was better with all kinds of sharing, taking turns, ending an activity, etc, kinds of things.  For him it was not a tv-based problem, the tv was the battlefield for some more general issues.  There was also a lot of “just let him have it if he wants it” going on, but my other kids wanted to have a turn on the tv.  Anyway — I hope you get a good plan, and that everyone will cooperate, and not blow off your concerns.  (Edit — but a younger child, and he was not addicted to tv!  He just had — I would imagine similar behavior issues.  But there can be so many different things going on, that’s why it is good to have personalized help!)
 

As far as tracking…. When my son was in ABA, I was either making check marks on a log, for things like spontaneous talking, or I was keeping a running ABC log.  On the running ABC log, I had a margin where I could write out if there was more context or back-story or something going on.  
 

But right now, I am thinking — I have started attending a bi-weekly support group, that starts with giving a brief summary of how things are going currently.  I am thinking I will write out a paragraph and then have bullet points, and have it be a record and also help me gather my thoughts for the support group.  And I can add in-between, too, but this seems like it would be about the right amount at this point.  

Edited January 1 by Lecka

[Mrs Tiggywinkle Again]

3 hours ago, Quarter Note said:

You are right, Innisfree, and I do recognize that.  Playing Minecraft together is about the best bonding time that my tow kids have with each other right now!  Policing their Minecraft playing is very, very low on my priority list right now.  

I just wish that they would do it in the same room instead of yelling across the house to be heard by each other! 😉 

I gave my kids walkie talkies for this exact reason. 😂

Minecraft and Fortnite are about all I allow right now(a few Roblox games as well), and a lot of it is that playing together as well as giving my ASD son something popular to talk about with peers.

[TechWife]

On 12/28/2023 at 6:39 PM, Quarter Note said:

Thank you, @lmrich.  We are getting professional help.  It's just not doing much and it's simply not fast enough.

I know not everyone can do this, but I’ll mention it just in case. Dear friends have a ds similar to yours. After trying several things, as a “last resort” they decided to send him to a therapeutic boarding school. He was there for about 18 months, IIRC. He graduated from their local high school this year. I don’t know the financial particulars. 

[Lecka]

Just to be encouraging — several times, I have been so, so frustrated, and feeling like things weren’t going to change, and then things would improve.  
 

It is really hard to be trying new things, and normal for things to take time!  It’s also true there should be results but it can take some time to see, if it’s a normal “taking some time,” or is it going to be effective….. and it is so mentally challenging at the time.  
 

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

[kbutton]

On 12/31/2023 at 1:44 PM, PeterPan said:

My biggest worry? I die or am incapacitated and no one but me knows the plan!!!!! So I write it down. Every time it changes, I write it down. 

From a different (medical) perspective this is great! 

Lots of emergency people suggest putting this information on the fridge. If you don’t need an emergency folder, that’s fine, but you could keep something similar on hand in case you are incapacitated. We have a red three-prong folder with a “resume” in it and major diagnoses/blood thinner meds listed on the cover. The medically complex kid wears a medical ID also.

The resume has the full list of meds/conditions, contact information, and some condition-specific information for the rare health stuff. It’s one page front and back. Until we were at a conference, I had not considered trying to condense to one page, but it was incredibly helpful. 

We add in other tabbed pages with insurance information and emergency info pages from organizations dedicated to education about his issues (more details about his post-anesthesia care needs or about imaging, etc.). He has a duplicate folder at school, and we always take the fridge one on trips.

Your version could include information about how he self-advocates and regulates in addition to his meds and include contacts for his doctors and support people. 

[PeterPan]

On 12/28/2023 at 6:39 PM, Quarter Note said:

 It's just not doing much and it's simply not fast enough.

Oh my, I missed this comment. I feel for you, sigh. The only thing you can change quickly is *yourself*. When we were at our worst, our behaviorist came in fully pregnant and knew how to talk with ds in a way, even how to make demands, and not get hurt. In that moment I knew that *I* could step up my game and learn things to help me do better. You can't change a need for meds quickly or get into a psychiatrist quickly. Well that's not true. In our area the county board of dev. disabilities can get you that kind of emergency access sometimes and get you referrals. And I do question how much some meds could make an immediate difference.

So anyways, you can change yourself quickly. You could:

-watch the training videos for interoception 

-google for info on Zones of Regulation

-read Stop that Seemingly Senseless Behavior

-read Stuck Strategies by Carroll

I can even throw you some links. I'm saying spend one hour with one resource and look for 3 things you can do differently. You can change YOU immediately. And frankly, with autism we can ALWAYS do better. 

https://holybrookacademy.co.uk/wp-content/uploads/2021/03/Holybrook-guide-to-the-Zones-of-Regulation.pdf  You can find more, but here's something to get you started learning about the Zones of Regulation. I'm not saying to teach it to him, because frankly I think it's a better tool for the adults. YOU need to recognize what zone he's in so YOU can understand when to decrease demands and where he's at. As YOUR observation improves, your ability to stay safe and head off problems will improve. 

https://www.kelly-mahler.com/product-category/online-courses/  Pick whatever you can afford and watch it. It will RADICALLY ALTER how you work with him and how you live with yourself and others. It's something you can do today to improve your situation.

https://www.amazon.com/Stop-That-Seemingly-Senseless-Behavior/dp/1890627763/ref=sr_1_1?crid=2LRM9OZA4JN86&keywords=stop+that+seemingly+senseless+behavior&qid=1704144722&sprefix=stop+that+seemin%2Caps%2C101&sr=8-1  This brief book takes maybe an hour to read but it will pay RICH REWARDS. You'll very quickly learn the functions of behavior and how to watch for them, which might help you recognize why your dc is doing something, what function it serves for them, and how you can help them safely. This is ESSENTIAL reading and it will literally take less than an hour. It could make a massive difference in your safety just by helping you interpret and meet needs more accurately.

https://www.amazon.com/Dangerous-Son-Liz-Garbus/dp/B07CVN4Z4D  This won't necessarily help you because it's more what you're living. This movie/video made me more determined to figure it out. No one knows everything and even asking experts to help doesn't solve everything.

https://www.amazon.com/Stuck-Strategies-What-Students-STUCK/dp/1937473996/ref=sr_1_1?crid=1H9NLV6ZI1FJR&keywords=stuck+strategies+carroll&qid=1704146754&sprefix=stuck+strategies+carroll%2Caps%2C97&sr=8-1  This book is brief but I got better language to work with my ds, a better mindset. In that vein, you should also read about PDA. Since I read this book years ago SO much has come out about PDA. I'm going through another website looking at books and there's SO much new stuff I need to read!!! PDA is the topic to read about that will help you. The mindset, the language, the new research on what works.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843796/ and https://pubmed.ncbi.nlm.nih.gov/19851983/  These are two similar articles on the topic of rumination. My ds would *ruminate* as part of his aggression, and that ruminating is something that, when you recognize it, you can take steps on your end to try to distract/redirect. Mindfulness is what they talk about here (the interoception body scans!!) but even just a cognitive break can help. Kelly Mahler talks about this as a strategy in her courses which is why it's science you can put to work IMMEDIATELY. Cognitive work snaps them out of the emotional rut their in. So something as simple as a math problem or asking them to name their top 3 of whatever *can* make a difference. You take a person who is going totally with this emotional roller coaster and you're helping them get off and get back to rational by doing a cognitive snap. So before my ds was on meds, I would do things like every night asking him a happy list making question. (If you could go to Disney tomorrow, what would be your top three rides and it what order? If you could meet....) We're taking an irrational place and helping it go more cognitive. We're moving from ruminating to something positive. This is stuff WE can do immediately to help them.

See if this link pastes in. It's another thing you could do in one hour that would radically change *your* ability to work with your dc. This is for YOU and if YOU do it (or other trauma/tension releasing methods), it could help you feel better to be in a better place to work with him. You can't change what is but you can let go of the harm and not let it stick with you and tear you up. Your body is holding the physical consequences of the stress and aggression you're surrounded by, which is making it harder to feel your best and process. This is something to help you be more functional.

 

Edited January 1 by PeterPan

[PeterPan]

If you get bored and have done all that, then here's a website with professional quality books to read.  https://autismawarenesscentre.com/product-category/behaviour/page/1/

[PeterPan]

https://www.shambhala.com/sittingstilllikeafrog/  You can play this for free. I'm not guaranteeing it will help, but I can tell you it's another thing I did with my ds before we had meds. Turn it on, play a track. They don't really have to do anything. We did it as I was putting him to sleep.

Weighted blankets. Do you have weighted blankets? Target may still sell them. They start low, maybe 12 pounds, and you can get them in increments up to 20 pounds or more. I HIGHLY commend weighted blankets to you. I have my ds trained that if we're out of sorts we drink chamomile tea and put on weight. I might put actual dumbells in his lap or put on him a weighted blanket or both. I just say truisms like "People who are out of sorts drink tea. People who are out of sorts like to rest with a weighted blanket." Definitely put the weighted blanket on at night. They'll say 10% but we use more. He has usually been at around 15%. 

Drop anything with lots of methyls. I'm not giving you medical advice about your meds, though you should be asking that when aggression is involved. However there are *foods* that are high in methyls: orange juice, chocolate, CAFFEINE, etc. In our house those things are GUARANTEED to increase behaviors. Milk also messes with their brains. It was actually one of the reasons we finally needed to go with meds. If I controlled *every single thing* my ds ate and drank and gave him supplements to control the methyls, in theory we could almost get there. But we had no margin, no safety. No, with the meds, he can have some OJ or or a chocolate and not be a rip roaring mess. In fact, his interoception is up enough that he will sometimes even NOTICE he's out of sorts after eating those things (if they have a super ton of methyls, like coffee/pop) and will ask for something. Then I either give him more of his prescription med (per the doc) or give him some niacin. But that also means that kids who are eating tons of unusual things during the holidays (and have low D because it's winter) might have ramped up behaviors. Again, something you can look at immediately to make a difference. Just pull the caffeine, pull the OJ, pull the chocolate. Might help, doesn't hurt.

[PeterPan]

https://knowyourgenetics.com/

I'm NOT saying buy her books or supplements or anything. This just happens to be a great place to load your raw genetic data, if you have that, to learn about their methylation cycle. It will crank you out a handy chart, which will allow you to see relevant issues with vitamin D, B vitamins, methylation cycle (MTHFR and COMT), etc. that can impact behavior. You can predict medication interactions. The charts will help you know what *form* of vitamin to take if one is needed and then you can use any brand you prefer. 

She does *not* look at everything that needs to be looked at. Zinc receptor genes and NBPF3 (which converts b6 to the active form) also affect anxiety which can drive behavior issues. Those you can search with another engine.

To get the raw genetic data, you'd go to 23andme and just pay for the cheapest option. They run the same data chip no matter what and you don't care about their health reports. It will take a while (4-6 weeks) BUT it will give you info that might blow your mind and revolutionize how you approach things. The genetics lets you move beyond guessing. 

Edited January 1 by PeterPan

[PeterPan]

When I watched A Dangerous Son, what I realized was that you could take the dc, go to great lengths to help them ,and then have them come back to the same situation. The dc needs help, but also the parent needs these better tools. 

Sometimes there's some trial and error. You might read a book, try things, and go wow those techniques were not for my dc. Some techniques are better for certain IQs or certain personalities or just whatever. There's growing together in this, kwim? As long as you stay safe, as long as you de-escalate, you can give yourselves space to GROW TOGETHER. You'll both grow at this. 

I'm not saying it's not ok to send out or do a placement. I'm saying there is no avoiding the need for us to up our game. 

https://autismawarenesscentre.com/shop/behaviour/autism-spectrum-disorder-de-escalation-strategies/j  A whole book on de-escalation. I haven't read it, but if I can find it I will. Decreasing stress is SO important, and the warning signs can be so subtle. A lot of our kids are actually functioning at yellow zone (stressed, on the edge) ALL THE TIME. It's why they snap and go red zone so easily. It's possible to get to a place where life is green zone with occasional yellow, but that's as all the pieces come together (meds, self-awareness, etc.). Right now, you're living yellow and red zone a lot, so you want safety, de-escalation, lots of patience. 

I have another video I want to find you. I just can't remember the name.

Edited January 1 by PeterPan

[PeterPan]

Ok, this is a flood. 🤣  This is a lady I watch on youtube when I want new ideas on how to do better with my ds. Carla Butorac, and she has everything from classroom organization to behavior tips to academic intervention tips. Every video is SHORT and I guarantee you could look through her youtube feed and find three actionable things in an hour to change how you work with your ds. I'd start with the other resources I have listed, but I LOVE her stuff too. 

Btw, I'm linking this one because the Easy Button idea so inspired me. Think about all the ways you could use an EASY BUTTON to de-escalate a situation! You can actually get one at Staples or you can just pretend. I'll literally just say "Do we need an easy button here?" 😉

 

 

Edited January 1 by PeterPan

[ScoutTN]

20 hours ago, TechWife said:

I know not everyone can do this, but I’ll mention it just in case. Dear friends have a ds similar to yours. After trying several things, as a “last resort” they decided to send him to a therapeutic boarding school. He was there for about 18 months, IIRC. He graduated from their local high school this year. I don’t know the financial particulars. 

We too know a family that made this choice. Quality programs run $5-8K a month. Most have very limited financial aid. So this option is sadly only for rich people or those willing/able to borrow. 

[PeterPan]

It's *very* important to my ds to have a safe space. Sometimes my ds' stress goes up because I mess that up or it gets jostled or whatever. Like sometimes I'll clean it and forget to put things back. So if your ds *used* to have a safe place they could go (and destroy inocuous property, have soft things around them, be dark/quiet/peaceful, etc.) and they've lost it, that might be another thing to get back. For my ds it's a small closet. The floor is covered in pillows and mounds of stuffed animals. We never make bones about the walls being dinged up, etc. He can go in there (and it's not very big, so it looks pretty funny with him in it now) and be SAFE. 

This is not something that he self-advocates about. It's something I had to set up and then I had to fix when I screwed it up. And for some reason I screw it up every so often, lol. I'll get these cleaning streaks.

Whatever it is, wherever it is that your ds goes to feel safe/reclusive/peaceful, make sure that's available and as he needs it, fully stocked, in working order. If he doesn't have that, collaborate with trying places or making a space into something that feels good to him. An OT can help him inventory of sensory to learn what feels good to him. (lights, music, etc.) Might ds doesn't want any of that stuff, doesn't care about lights and all that jazz. He just needs a soft, reclusive place he can be left alone. It's not permanent (when he feels well, he comes out) but it's essential. If it's not happening, it's another thing YOU can do in one hour to make a difference.

[PeterPan]

3 minutes ago, ScoutTN said:

We too know a family that made this choice. Quality programs run $5-8K a month. Most have very limited financial aid. So this option is sadly only for rich people or those willing/able to borrow. 

I was told by our county that there are multiple funding options and they would help you sort it out if the time came. We also had issues they recently improved with our state laws. People were having to *sign their kids* over to the custody of the state to get this care, which was just a horrific situation.

Edited January 1 by PeterPan

[PeterPan]

You could have someone take your ds out of town with them for a couple nights, which would give you time to read, rest, and work on these things. Breaks are good. Or just have them take him out of town for a couple nights and do nothing but watch movies, lol. 

This is stuff I learned to do over the course of several years, not all at once. Save all the ideas on a pinterest board and come back to them, bit by bit. You can GROW into this. We all grow and learn. You take care of yourself, you de-escalate, get safe, then grow in your ability to do things better. 

[ScoutTN]

7 minutes ago, PeterPan said:

I was told by our county that there are multiple funding options and they would help you sort it out if the time came. We also had issues they recently improved with our state laws. People were having to *sign their kids* over to the custody of the state to get this care, which was just a horrific situation.

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

[TechWife]

7 minutes ago, ScoutTN said:

We too know a family that made this choice. Quality programs run $5-8K a month. Most have very limited financial aid. So this option is sadly only for rich people or those willing/able to borrow. 

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..

 

[PeterPan]

4 minutes ago, ScoutTN said:

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

Oh mercy, I don't. I know in our area when support lists have that conversation the next issue is always safety. There's this assumption that christian means safe and unfortunately s*xual abuse doesn't look at the sign on the door, sigh. There didn't seem to be a lot of correlation with denomination and safety. I hear you on why a christian environment would be preferable, just not sure how well it is working out in our area.

Ok, I can just say this. I decided it was cheaper for me to *travel* with my ds and take him places every so often than it was to send him away. Think through that. Think about what IS working and whether you could be flexible and do more of it. What if the things you thought had to happen didn't have to happen. What if the things that are causing the stress could change? Stress and anxiety is the #1 driver of this stuff. Winter and lack of D amplifies it (methyls go up, mood goes down). 

It was our behaviorist who clued me in, saying that in her experience the clients who took a little vacation for sun mid-winter did better. There's science and chemistry to that. And it's the system that pushes and says no we can't do this or that. But we can send them to residential, but we can't go way out of the box??? 

So just me, I decided it was cheaper to put us so far outside of the box that the box went poof and turned into a cloud and dissolved. There is no box. Like way way gone. I was just noticing in that book list a book on using "student led" stuff for school. Haha, homeschooling has called that unschooling for years. We are SO far off the grid these days. My ds says hey I want to do this and I say fine do it, learn a new skill as part of it, and I can put it for a credit toward your goals, boom. 

That's just a ramble. There's just this stress we feel trying to make our kids conform to a system and the question is how we can invert that and form a system to work for our kids.