ideas needed cross posted

[Melissa in Australia]

1 minute ago, Pen said:

 

Sounds like excellent progress!!! Good on you!  

 It’s good to look at the long view to not lose track of positive progress when day to day can seem barely noticeable.  Or IME when some days seem to be worse than the previous one...

Those are all out breaths of blowing—do you have in breaths toys also?

 I think one could blow something even when still only doing shallow breathing for the in breath   ?

good point. I didn't even think that they are all breath out toys. I will need to get some breath in ones. thank you for that

[PeterPan]

6 hours ago, Melissa in Australia said:

 I know you mean well but The mother has not been blamed  I am actually pretty upset that you think I have . 

I think I said something that had a 2nd meaning for you, which I didn't anticipate, sorry. I wasn't thinking of the bio-mom at all. I meant blaming YOURSELF for environment, for not doing enough, for not keeping them from something, etc. 

So the challenge for me with ds is that I had lots of professionals showing him lots of things, and he couldn't DO them independently. So what we look for in a situation like this is how much support is needed to use the strategy. Like say we have a calming strategy or a Zones of Regulation check-in where they then choose a strategy. How much support does the dc need to make that happen, how much of a prompt? That tells us a lot, kwim? My ds is level 2 support for his ASD. He can't apply for himself the strategies. Now we're making PROGRESS, sure. But it's something we're very cognizant of, that this is a dc who requires SUPPORT. He can do things with support that he can't do without support. And of course we'd like over time to get that independent.

So with a strategy that he has learned in a session, that works at home how? With a list the worker holds up and he chooses? With a prompt to check his heart rate and his zone? With him self-monitoring because he's been practicing in his sessions and doing check-ins 3-4 times a day?

Sometimes the gap between being able to apply the strategies and having it all be external is the ADHD medications.

It's just stuff to think through. I waited till my dd was 15/16 to start meds, so I get why you could be like oh we're making it work. I get it. That's what I would look for, how they're doing in transferring the responsibility to THEM to be able to apply the strategies and good instruction they're being given. You want to quantify how much support it takes from you to make it happen, whether they can comply in the moment, whether the system is such that any worker can step in and offer the same support (it clearly isn't), whether the kids are learning to use those strategies on their own with faded prompts.

You have to be working toward faded prompts and independence, because you want them to be able to live independently. If they just go to sessions and do it there but AREN'T getting it carried over to life (because they're immature, because they have disabilities), then are we really there? 

It's not like I've arrived on it. I'm constantly trying harder as I learn more.

[PeterPan]

Part of what I do is I look at school structures. Look at Christine Reeve's stuff at Autism Classroom News, TEACCH, Zones of Regulation, etc. and see how teachers in a variety of kinds of classrooms (inclusion, ED, etc.) are handling it. These classrooms are all dealing with those same issues. We toured a dyslexia school and they had Zones checkins. But the way they provide support is different from an ED classroom or an inclusion classroom, because of the level of support the students need. 

So schools are really sharp about working on independence and about transferability. The tools have to work no matter who the teacher or worker is that day. They just have to work. They have to be obvious and the dc has to be trained on them. 

There *are* kids who do things in sessions and have them transfer to real life. I just don't happen to have one of them, lol. But if you read on the boards here, that's a big complaint, kids who go to sessions and can't do it in real life. And the gap is filled by those supports and by dealing with whatever else is holding them back. For some kids, meds make a big difference. Interoception work, EF work, etc. can make a big difference. With interoception work we turn up, turn down, or balance out the volume of the signals they're getting to use for their self-monitoring. With EF we can improve how they remember delayed targets. Do they even REMEMBER what they're supposed to be monitoring for? No, when kids have EF deficits it just all jumbled together, a pile of undoable tasks, lol. 

Anyways, when I talk about support, that's what I'm looking at. I'm looking at how schools, in a variety of classroom settings, are making it happen and then I'm figuring out which level of support would get my ds where he needs to be. There are novel ways to target it. There are some companies doing watches now that beep/alert if the dc's heart rate goes above a certain level. I don't have a name for you, have just read articles on it. Maybe you can set a Fitbit to do it? I think the iwatch does. People are setting alarms for check-ins to make the self-monitoring more independent.

And maybe they're not as bad as all that. That's just where I live, trying to help someone become independent in self-monitoring because I will NOT be there for him always. My ds will end up in JAIL if he does not self-monitor. I kind of have a deadly serious problem, kwim? And when he does stuff, I tell him straight, people who do that go to JAIL. You're 10 now, but at age such and such you will go to jail. 

Remember too that red zone and being out of control is NOT about being angry. Someone can be out of control, not reigning it in, when they're happy, when they're doing something impulsively. The issue is control, whether they're using their self-control, whether they're self-monitoring to apply their self-control. And meds improve self-monitoring which improves safety. 

[Pen]

Interesting website — wonder if researcher at University of Rochester, or people at the website below, could be contacted and have ideas for your twins’ helper person based on their FASD specific research?

http://depts.washington.edu/fmffasd/promoting

[Pen]

https://www.ncbi.nlm.nih.gov/books/NBK344242/

May have more helpful ideas to implement with your twins’ helpers or others.  

[Pen]

10 minutes ago, CuriousMomof3 said:

I feel as though the strategies that work for a kid like yours, for whom cognition is a relative strength, are different from the strategies that work with 8 year olds with intellectual disability. 

 

Yes.   And some may have ID to point where they will still need hand holding to safely cross a street when they are 28.

 

10 minutes ago, CuriousMomof3 said:

At 8, what many kids with ID need is what @Melissa in Australia has described.  They need an adult to structure the environment to help them be safe and calm. 

 

The article I linked above also suggested a “navigator” to guide the FASD person much like a Seeing Eye dog can guide a blind person.  It made it sound like in some situations the “Navigator” can be a non FASD child. 

10 minutes ago, CuriousMomof3 said:

They need routines where their sensory and regulatory needs are met consistently and they can gradually stretch their ability to attend and participate and feel successful doing so.  They also need adults to be able to read their cues,

 

Yes.  

And they don’t know or can’t express very often what they need in an articulate way. 

They need external regulation 

and external filling of needs whether that’s food or a hug

This is a reason I thought the Gabor Mate book might have suggestions that could help Melissa with her twins — even though the book is supposed to be about ADHD not FASD ... because really I think it’s just about people, what people need.   And it fits so well with what Morgan Fawcett and Myles Himmelreich expressed needing, but  it being able to express. 

 

10 minutes ago, CuriousMomof3 said:

I'll also say that while I've seen medication work for lots of kids, and I've seen it work for kids with ID who need it for other reasons (e.g. aggression, anxiety), I haven't seen it work for building attention, when the reason for the lack of attention is ID.  There simply isn't medication for that.  

 

 

[PeterPan]

1 hour ago, CuriousMomof3 said:

many kids with ID

I missed there was an ID component here. What you're saying makes a lot of sense. 

[Melissa in Australia]

Thank you all so much. I feel so supported. I really appreciate it.

[Melissa in Australia]

update

 the worker came today - she was a lot better prepared mentally . she had obviously done a little bit of research on calming activities etc.

 We had a short list of 4 house rules that I went over with the twins 3 times during the morning before the worker came. I handed them to the worker in front of the twins so they knew that she knew about them. She  read them to the twins 3 times ( they were all safety things).  Thanks guys for this suggestion.

I had also made it clear to the worker that I would back her up 100% if she said no etc to the twins- so I think she felt empowered to be firmer. The twins feel safer if they know that the person is really in control and they don't muck up as much

The twins had a ball and the worker really enjoyed herself.

thank you so much for all your encouragement and suggestions that have helped this work better. Greatly appreciated 🙂 

 

[PeterPan]

Oh yay, that's exciting!!!!!!!!!!!!!! So, so much better!!!!!!!!!!!!! Happy dances for you!!