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If you had funding provided for 2 hours a week for someone to come in and do whatever ideas you came up with with 2 delayed 8 year old boys what ideas would you come up with? they are very very delayed in just about every area

So far I am thinking art - including painting of whatever great artiest we are looking at that week. - plus some clay work with air dry clay this will take less than 1 hour - the twins have a very short attention span. ( Art is the subject that I drop when we are short of time so it gets dropped a lot) 

 some therapy exercises left from the OT - this will take 10 minutes max

insert other ideas please

I am not paying for this - I have received funding  that will pay the person directly - the person is getting what I think is an excessive amount of $$$ per hour so I want it to  have some actual benefits for the twins, not just respite babysitting activities - 

Edited by Melissa in Australia
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the main area we are working on at the moment is being able to concentrate on a task for more than a few minutes. these guys have FASD? Global Developmental Delays, Intellectual disabilities, ODD, ADD etc.

 I was hoping for hands on type activities - things that I am not so great at - sensory type things. etc. they will need to do some movement type activities after art type activities, and then some more calming down activities.

I was thinking of some board games for if there is time to spare. I have a few. they are great for teaching the twins to take turns, wait while someone else is having their go, following instructions and not sulking when you are not winning.  I have put aside Kids Charades as an activity for tomorrow ( first session)

 I wont be able to assign cooking as my stove is a slow combustion wood heater that requires skill to use. plus the twins are so impulsive and do things that can put themselves in danger - not something I feel comfortable about them doing with someone else

 we live rural so they already do a lot of walking, looking for animal tracks, nature science,  gardening type things as part of our every day life

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I might choose things you don’t personally enjoy doing.  

Or things that would be of help. And that increase life skills? 

Though the stove is not okay for the children to use, what about food prep other than cooking it?  

If they don’t know how, or not easily?  Salads? sandwiches?  Putting together ingredients for soup or stew? How about topping pizzas and doing it artistically?  

Sorting folding and putting away clothes? 

Edited by Pen
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4 hours ago, Melissa in Australia said:

If you had funding provided for 2 hours a week for someone to come in and do whatever ideas you came up with with 2 delayed 8 year old boys what ideas would you come up with? they are very very delayed in just about every area

I have had in-home workers like this for my ds, and I can tell you it took a while to find my groove and realize what they could do and what was unrealistic. I don't know that you're unrealistic, I was unrealistic, thinking they could homeschool and do what I do. We make it look easy and are so unlauded as a profession, that won't do quite realize most people are NOT ready to walk in and homeschool.

I assume your ds have some developmental delays or needs and that's why the worker is there. The things they do are merely the *foil* to work on the skills and areas where they need to improve. No I would not hand the worker an art curriculum or something that you have in your head. My workers need IDIOT-PROOF. Open and go. Kits. It also sounds like you're asking them to spend an hour straight with kids who probably only work in 10-15 minute amounts.

How are they for COMPLIANCE? Do they do what you ask when you ask, or do they require quite a bit of structure, pre-instruction, time, etc. to comply? How are they with complying with others? Compliance is a big goal, and compliance is nurtured in a very natural way by turn-taking and doing things the kids want to do, which then allows the worker to say what she wants to do. That worker wants to be very high value in their world so that the dc WANTS to work with them. That means she has to come in and do things THEY want and is going to look for things she can make happen that will get that good will going.

If I bring a worker in and trap her in a room with my ds, then we have made the whole thing schooly and oppositional. What works for us is pre-warning and clear expectations. We're going to play for 10 minutes with the timer, then we're going to do X. Then we'll take a break with a timer for 15 minutes, then we'll do Y. Choice improves compliance, and you have three people making choices, not just 2. I would work it by having a list of 3-4 brief things (no more than 10-15 minutes each) that are your demands, the things you want them to accomplish. They get free play for 10 minutes and then they start alternating demand, choice, demand, choice. When they get through the list, then they are free to play with their worker the rest of the time.

The reason you start with only 3-4 brief demands like that is because you want them to succeed. When they are able to comply and stay on task, the break times will decrease and the worker's ability to make more demands will increase.

School and the ability to contain someone in a room for 40 minutes on a task works because it's SCHOOL. They have physical structure and physical controls. It doesn't work in a home setting to expect that worker to maintain control for 40 minutes on one task when that is not the kids' norm. You have to build from what you already know they can do. So I'm telling you how *I* do it with my workers in home and what works. We start very low like that. And when you do that, you'll quickly get them up to doing a lot more tasks!!

Things that would be HIGH on my "demands" or task list?

-picking up a small, defined area. Make sure they actually can. Like make sure there are drawers for the clothes and that it's actually possible for them to do it successfully in 5-10 minutes. 

-doing a small puzzle--Can they do puzzles? You need some 35 piece puzzles of similar difficulty. At first they can do 1 puzzle of that within reach level together, with the worker. If it takes only 5 minutes but was appropriately challenging (30 piece, 60 piece, whatever), then you nailed it. The goal is success so the worker can make harder demands the next time.

-a picture book read aloud. You wanted art, so it could be about an artist or by a famous artist. How is their narrative language and their ability to retell a story? How is their syntax? Do they have language delays? I go to https://fab.lexile.com  and I put in the lexile that fits my ds' current level of syntax (language, sentence complexity, which is part of what lexile calculates) and I get a list of books. I can then hit select categories like art. I just read a really charming series to my ds that was on a lower lexile level and had a brief summary of an art technique and then an activity. They could do that (if you prepped the materials ahead) and it would take 5 minutes for the book and 10 for the activity. You'd have hit tons of skills this way, with attention, compliance, your art goal, receptive/expressive language, etc. 

-picture book to work on narrative language--Find the book the same way, with the lexile finder. This is a little more complicated and the worker probably is not ready to do it. If they have narrative language delays, you could bone up, teach her quickly the level of narrative that is expected, and she could make it happen, yes. The best curriculum to make this easy for you is the autism or story grammar marker kit from Mindwing Concepts. They have printouts with all the levels of narrative development, so you just print the one they can do and have the worker practice it with the picture book of the day, boom.

-some kind of game that practices expressive language, giving descriptions, or using non-verbals. It can be a Kids Charade, I Spy with My Little Eye,          What's Yours Like?      , anything you have lying around. I pick these games up here and there and LOVE using them with my ds. You may find charades is almost impossibly hard for your boys if they have language issues. Depends on what language intervention they've had. I've done a ton of work on descriptions and still my ds' acting out will be way out there, lol. If you go through Verbalizing/Visualizing or Talkies with them, you'll have the word cards. You can find the labels for free (shhh) on the Gander Publishing website. It's words like movement, parts, color, size, etc., kwim? It's obvious stuff to US but not to THEM. So you put those words onto a paper and make sure they're USING them to figure out how to DESCRIBE the thing in the game. Not too hard, huge, huge, huge language benefits. If they play I Spy, not only are you describing with those adjectives, etc., but you can bring in prepositional phrases. I need to work on those with my ds, because he can never just say WHERE SOMETHING IS. He'll point, mumble, make jibberish. So I play a game where I find the thing ahead and then give him explicit directions and he's supposed to go find it. It's the 3rd book from the left on the top shelf of the green bookshelf beside the stairs. That kind of thing. You have to start small obviously. And you take turns making these "where" descriptions. So, so real life useful. Improves how they function, how they can express and self-advocate, costs nothing, and it's fun.

-independent work--The dc selects something they would like to do to busy themselves and the worker sets a timer for 10 minutes while they do it. Gives the worker time to write her notes and teaches the dc waiting and busying self skills.

Ok, that's some stuff. You see where it's going. If there are things the kids like to do that are useful, that's fine. Doodling or drawing contests could be fun. I do that with my ds now for the visual motor integration. They would take turns picking an object and drawing and then giving COMPLIMENTS and voting for the best. Tons of social skills there.

I try to look for things my workers do well. I had one worker who was this killer artist, so she could do Draw Right Now with my ds. Another was certified scuba instructor, so we would go to the Y together. See what the worker does well and give them a way to do it.

There's a learning curve to using a worker. Just don't expect them to be you. You're an experienced homeschooler and you have a level of control/compliance and experience they don't. It's good for the kids to learn to comply with someone else, but the demands have to be within reach enough that they have success. They're not going to do more, initially, then they already do with you. They're not going to magically have longer attention spans. The magic is when they realize they don't have to be in charge to have fun, that it was fun being with someone else, that they can take turns, that they can wait. Do your kids need to work on waiting skills? Waiting is a HUGE issue here, so our workers ALWAYS tackle it. They always do something for independent work also. If you do the math, 4 demands at 10 minutes plus waiting 5-10 minutes plus independent work for 10 minutes is an hour. That allows them time to alternate with choice activities and breaks.

I hope it goes well! 

Edited by PeterPan
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Things you can add as you get it rolling?

-life skills. cooking. laundry. anything really. We got the Cooking to Learn volume 1 and it's WONDERFUL. My ds is SO proud of his fledgling cooking skills and loves to show them off, which drives language, social, everything. They might be high value to add now, but that would depend on where your kids are. But sure, look into it. Could be really stellar as the last thing, that they always know they're going to end with some fun cooking. Food is motivating to my ds, so it's something we can harness.

-gifts, holidays. Giving, making, whatever

-reading time. If your boys can read but don't, they can work on this in short spurts.

-social skills in games. turn taking, losing, intensity. I have paid my workers to play Nintendo with my ds, ping pong, air hockey. I want him to be able to play with other kids, and I wasn't good enough at Mario Bros to help him learn that skill (staying calm, not yelling, play etiquette) LOL

-transitioning from one place to another. My ds would run off like a gazelle and not stay with the group. We needed him to be able to stay with the worker, stay with the group, and go from one place to another safely. So they can plan an activity in one place (outside at a specific spot on a blanket on the grass) that transitions to another and work on that skill

-calming strategies. I don't think personally I'd give the worker the OT homework, but I would give the worker the list of calming strategies or house rules you want her to teach. She can review them every session. Hearing it from another person can help.

-she can reinforce the social thinking work you do. We (the behaviorist) used the We Thinkers 1 series with my ds and then had the worker read the book that went with the lesson to reinforce.

Edited by PeterPan
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I understand the concerns about cooking and using the stove and safety. I also think that it might do well to work a snack activity into the schedule. This can be something that does not need to be cooked, but that the boys can assemble and then eat. This can be fun and rewarding for the boys, while also being somewhat challenging. They will be working on self control (not eating before the project is done), following directions, manual dexterity, and perhaps some math goals, like measuring.

For me as the parent, this would be a good activity, too, because it is kind of crafty, and I found crafts and messiness hard to manage, but my kids loved them. So it would have been a good thing for an outside helper to do with my kids.

Here are a few things that came to mind. I realize these may not all work, due to possible dietary restriction and/or family eating habits, but hopefully, they can spark some ideas.

Use a safe (dull or plastic) knife to cut a banana into round slices, then dip the slices into yogurt and eat.
Use a safe knife to cut pita or flatbread into triangles (can use this to discuss 1/2, 1/4, etc.) and then eat with a dip (jam, hummus, or whatever they like)
Spread cream cheese onto a bagel and then eat. More advanced -- cut up fruit or veg into smaller pieces and add to bagel before eating
Cut fruit into small pieces and mix into fruit salad, then eat
Cut fruit into pieces, then build layers of fruit and yogurt in a bowl
Measure out cups of pretzels, cereal, nuts, etc, into large bowl to make a snack mix, then eat
Crush cookies with a rolling pin (or fingers). Spoon pudding or yogurt in a bowl and layer crushed cookies in
Assemble a simple sandwich, cut in squares with a safe knife, and eat
Cut a bread stick or soft pretzel into bite-sized pieces and then dip into mustard, cheese, yogurt, or dip of choice

 

Edited by Storygirl
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36 minutes ago, Storygirl said:

cooking and using the stove and safety.

Cooking to Learn has them start with basic things like root beer floats. For my ds, having an ingredient list and gathering the supplies is very rewarding. Everything is written out, including the supplies to gather, the steps. It makes him feel good to be able to do something independently.

https://www.linguisystems.com/Products/20188/cooking-to-learn-1-integrated-reading-and-writing-activities.aspx  They have the link for the samples but the links don't currently work. I suggest writing them and seeing if they'll send you the samples, including the toc, so you can see what they do. It would give you ideas, but really the curriculum is worth getting. We're using it to build a cookbook/notebook for my ds of things he knows how to make. 

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Thank you guys so so much. Love some of those ideas.

They, with assistance can spend 10 minutes max on an activity like painting. I was planning picture study. We have done this before. I will do the picture study part with them before the worker comes. Then I will have a black line printout ready. The worker helps the twins paint them.

they do  play dough with their play therapist who is a psychologist. They also do LEGO with her and emotional things like role playing etc.

 

the mental problem I have is that the worker is being paid so much that I sort of feel it needs to be really doing something that I cannot do myself. She will be receiving over $50 per hour. I find it a huge amount of money. I realise that I have to get over this mental hurdle. But I just cannot stand wasting money.    It really is to give us some respite and is part of a large package of funding that includes lots of specialist Like  OT, Speech Pathology, Play therapy , and sensory toys.

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Thoughts On knives: Food grade scissors can be used for some cutting rather than knives.  Or if using a knife an adult can at least make the item so it won’t roll.  For some types of cutting (not a banana) dull knives can be dangerous because they don’t work well. 

Dough could be used instead of clay and perhaps after dc shape it, Mom could bake it while they do something else.  Gradually measuring and other skills could be added. 

I think making a list of your own things that are hard to do yourself would make sense.  

For me, playing a board game or doing art would be high on my list of fun things I would want to do myself with dc— but if they are hard or not fun for you then it makes sense to delegate them.  

 

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36 minutes ago, Pen said:

Thoughts On knives: Food grade scissors can be used for some cutting rather than knives.  Or if using a knife an adult can at least make the item so it won’t roll.  For some types of cutting (not a banana) dull knives can be dangerous because they don’t work well. 

Dough could be used instead of clay and perhaps after dc shape it, Mom could bake it while they do something else.  Gradually measuring and other skills could be added. 

I think making a list of your own things that are hard to do yourself would make sense.  

For me, playing a board game or doing art would be high on my list of fun things I would want to do myself with dc— but if they are hard or not fun for you then it makes sense to delegate them.  

 

the silly thing is I personally hate playing board games I have had to force myself to play them for the last 25 years with children ( and make it seem like I am having so much fun ) and art is so messy- I am not keen on mess on my hands . silly I know. Much better to have someone else do the messy art  and have it on their hands. 

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I think part of what would make this seem difficult to me is that someone has to plan out all of the 10 minute activities, and if that someone is you, perhaps the two hours of help ends up adding to your work, instead of being respite. Planning 10-12 activities per visit is a lot of planning.

Is it possible for the person to use some of each session to plan for the next session? So perhaps they would work with the twins for 90 minutes, then spend 30 minutes preparing for the next visit? This may or may not be allowed.

If not, I would try to make a set schedule that could be followed each time -- storytime, then art, then play Simon Says or Mother May I, then educational coloring page or maze, then snack + activity time, then practice math with blocks or geoboard, then board game, read science book, blah blah and so forth. So the specific things they do might vary, but the rotation of activities stays consistent. Then hopefully you will have a great worker who can just follow the schedule and pick which board game (or whatever) to play that day or maybe will bring things with them, ready to go, that are novel things for the twins.

That is probably obvious. But I would tire of coming up with a new list of activities for each visit, so I would try to automate it.

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2 hours ago, Melissa in Australia said:

She will be receiving over $50 per hour. I find it a huge amount of money. I realise that I have to get over this mental hurdle. But I just cannot stand wasting money.    It really is to give us some respite and is part of a large package of funding that includes lots of specialist Like  OT, Speech Pathology, Play therapy , and sensory toys.

What is that relative to your minimum wage? I can't even GET a worker to work with my ds if I don't pay twice minimum wage. And even then it's a struggle. The hours are irregular and there are no benefits like medical. Also the worker could get hurt. So yes, they have to pay more for a worker like this. 

So around here for $50 an hour, well that would be a person with a BA but not a teacher, not a professional of any kind. It would be maybe a nice mom who had a degree a long time ago and has some skills and wants to get back into work. I can't get any experienced professional for that price. For $60 an hour, yes I can hire someone with a master's, someone with experience. But no, around here $50 an hour gets you house cleaning honestly. Nice, honest person. And that's what you want. When you pay less, the person can be kind of scary.

1 hour ago, Melissa in Australia said:

the silly thing is I personally hate playing board games

Oh my goodness then definitely have the worker do this!!! I don't know why you're handing off the art. You already know what you want done, so there's no point. If she hadn't come, it still would have gotten done. I would keep thinking of this OTHER stuff.

It's never about what you can/can't do. You're intelligent and you can probably do most of what they do, in theory, on a good day. But can you clean your house, stay sane, have dinner on the table, etc. etc. AND do all that? No. So the state is paying for a safe person to come in and clone you. Just to clone you is $50 an hour. That's what it's telling you. So value yourself enough to say YOUR WORK with them is worth $50 an hour and that's what it really costs to get someone to come in and do it.

I like the games idea. They should probably play two and they should be interspersed so each dc gets a choice and so the dc do some demands (yucky stuff, stuff they don't want to do) first.

What do the dc NOT want to do for you? What do they balk at or give you a hard time about? This is what they need to do with the worker. Seriously. Like anything. Are they a pain in the butt about their rooms or how they make their beds or brush their teeth? What do they give you grief about? Kids will do anything for that worker because she is going to follow it up with playing games. And they will give over their mental hurdle over that thing and get better at it. 

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4 minutes ago, Storygirl said:

Is it possible for the person to use some of each session to plan for the next session? So perhaps they would work with the twins for 90 minutes, then spend 30 minutes preparing for the next visit? This may or may not be allowed.

If not, I would try to make a set schedule

Ok, so what I do with my workers (and I've used them on and off for 3 years now) is I put out a pile of the materials with the written list of demands. I used to have workers prep and paid them for that. Now I don't. They know there will be a pile when they come and the written list. And it's going to have the list of demands on that list. And the worker knows to proceed with pairing and then alternating choice and demands.

When my ds is in a place where he's banging out big lists (which also happens), the worker comes in and writes the list on the whiteboard and reviews it with him. That was when the worker was actually doing school work with him (which has pros and cons) and was hitting like 13-15 things in a 2-3 hour session. She'd write it out on the whiteboard so he could see. But when the list they're doing with the worker is more life skills and waiting and stuff, then a pile and a written list that the worker reads to him is sufficient.

I moved away from having my workers do school work with ds because they couldn't get enough compliance. Then I had the bad attitude he had with THEM carrying over to ME, which was completely unacceptable. When I realized I was telling my ds he shouldn't treated me like he treated xyz worker, I knew it was time to fire them. Like I said, in a school they have a lot of structure to get compliance. But you want to think LONG AND HARD before you give someone else your school work. If you like how that's rolling and don't NEED the help, I personally would not. Just saying. In my experience, it can backfire. My ds is a pistol and technically his IEP says ODD. It's not what any private psych has said, but I'm just telling you he's a real pistol. So I don't farm out school work any more. I stick to life skills, waiting skills, that kind of thing. 

The magic part is that my ds' behavior improves IRRESPECTIVE of what they work on. Literally, it's just the act of interacting with the worker, taking turns, complying, doing the give and take, having a fresh level of interaction, that is the magic. They don't have to do anything profound. The key is the worker has to make demands and it has to be interspersed with so much joy and choice that the kids blithely go along.

I need to go list for another worker, sigh. It would really step up our game. Our amazing, amazing worker left to go do her internship in another state this summer, sigh. So it's just amazing that you've got one. You'll get it figured out! It just takes a while to realize the mindset, what they're there to do, etc. You'll get it.

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59 minutes ago, PeterPan said:

What is that relative to your minimum wage? I can't even GET a worker to work with my ds if I don't pay twice minimum wage. And even then it's a struggle. The hours are irregular and there are no benefits like medical. Also the worker could get hurt. So yes, they have to pay more for a worker like this. 

So around here for $50 an hour, well that would be a person with a BA but not a teacher, not a professional of any kind. It would be maybe a nice mom who had a degree a long time ago and has some skills and wants to get back into work. I can't get any experienced professional for that price. For $60 an hour, yes I can hire someone with a master's, someone with experience. But no, around here $50 an hour gets you house cleaning honestly. Nice, honest person. And that's what you want. When you pay less, the person can be kind of scary.

Oh my goodness then definitely have the worker do this!!! I don't know why you're handing off the art. You already know what you want done, so there's no point. If she hadn't come, it still would have gotten done. I would keep thinking of this OTHER stuff.

It's never about what you can/can't do. You're intelligent and you can probably do most of what they do, in theory, on a good day. But can you clean your house, stay sane, have dinner on the table, etc. etc. AND do all that? No. So the state is paying for a safe person to come in and clone you. Just to clone you is $50 an hour. That's what it's telling you. So value yourself enough to say YOUR WORK with them is worth $50 an hour and that's what it really costs to get someone to come in and do it.

I like the games idea. They should probably play two and they should be interspersed so each dc gets a choice and so the dc do some demands (yucky stuff, stuff they don't want to do) first.

What do the dc NOT want to do for you? What do they balk at or give you a hard time about? This is what they need to do with the worker. Seriously. Like anything. Are they a pain in the butt about their rooms or how they make their beds or brush their teeth? What do they give you grief about? Kids will do anything for that worker because she is going to follow it up with playing games. And they will give over their mental hurdle over that thing and get better at it. 

Thank you, exactly what I need to tell myself.

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we had our first session today.

 mostly it went not bad. I enjoyed 2 hours of gardening DH enjoyed working on a project without interruptions. etc.

 They completed their art work  and apparently really enjoyed the clay project.

kids charades after 2 goes ended up in a all out brawl. regulation is the big thing that we have been working on for a couple of years.

Twins really took advantage of a new person who is not familiar with house rules to try and do things that are not ordinarily allowed though. like playing with the lounge room wood heater -(absolutely forbidden) running though the house while drinking ( food is not allowed out of the kitchen)

I added making lemon juice as an activity. the twins had done this activity before. We can rule out anything in the kitchen until the worker feels more confident to say NO. I hear they were pulling knives out of the ( supposedly childproof) knife draw and running around with them . purposefully spilling juice around all over the floor and running completely amuck . Dd ( who is home for winter break) had to come out of her room and try and restore order. 

maybe I need to be closer next time. though the whole point is for me to be getting a break

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Is this worker trained/experienced? It sounds like she was not staying in control and didn't have enough to do. And for my ds, novelty helps. If they already knew how to do it, did the task, then got bored, whoosh.

Hmm, access to knives. I definitely think about that, sigh. Sounds like they shouldn't have anything more than a lettuce knife at this point, something you can't hurt anyone with.

Are they on medication? I'm not being trite. No worker can bust through something that needs to be medicated. We had workers when ds did NOT have his (significant) biomedical interventions, and we have had workers since he has. Radically different situations. So with that level of impulsivity, first thing out of the block I'd be asking about ADHD meds. Is there also aggression or serious emotional instability? Maybe run genetics while you start the ADHD meds. If there's aggression (my ds), then there can be the more unusual over-methylated kind of pattern which stimulant meds can aggravate. But if they're the more typical undermethylator, MTHFR defects, you'd be safe to do stimulant meds.

And maybe you already have. I'm just saying some things you can't behaviorist out, can't ABA out. It's not the worker's fault if those kids' bodies are 0-60, off the charts. Unless she's some kinda yoga instructor doing mindfulness with them first, they're not going to be in a place to succeed. You have to treat the body too.

Ok, so that would however be an exceptional side point. You need clear expectations and she may need to read rules. She would do well to do some mindfulness/body scans with them. Have you worked on interoception yet? Someone who's body is going that far that fast is not paying attention to their body signals. So you'd really like to slow that down. It sounds like working on interoception could give you a lot of gains, long-term, permanent gains. And the mindfulness and body scans you do as part of that work will bump EF and improve self-regulation. Win-win.

So the other thing is that by attending to one task too long, they maxed themselves out. Then you're more likely to have behaviors. Is two hours longer than they normally even do school with you? Think about it. And you just doubled it. So if they only did two things in two hours, that's why it went chaos. The tasks have to be easier, low demand but still a demand, with the choice between as breaks. She needs to be using timers.

I usually have pretty experienced people in with my ds now, because honestly he out thinks less-experienced people. I would meet with the supervisor and worker and go over the data she made immediately. She may not even want to come back, given the way it sounds like the session went. If she does come back, she needs a much clearer plan, more structure, more upbeat tempo with things to do that stays ahead of their waywardness and boredom. Entropy is a disaster with ADHD/ASD. You have to have structure, a plan, and she has to think ahead of them. It's why my ds outgrew workers, because they couldn't handle it. Now it would be nice to say he shouldn't be that way, but then hello we wouldn't be asking for help, lol.

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These boys are twins? Are they socially motivated? Do they ENJOY when people pay attention to them, or are they internally satisfied between themselves and meeting their own perceived social needs?

Working with a worker works because the dc is motivated and feels he gets something from the worker. If the twins are motivated to be with themselves and SATISFIED with their situation, then I think you'd have to bust through that. Given that they fought, I would separate them and next week, one dc goes with you while the other gets an hour, then switch. That way you bust up their little satisfied band and the dc has to deal directly with her. And benefit two is the other dc gets some dedicated time with you to work on pairing and compliance without distraction. It might be really brilliant, and it would make you feel better than you're not doing nothing in the process.

I would probably give them identical lists of demands, and I would increase them and increase the unfamiliarity/challenge to make it interesting. Unless this woman is 18, she can handle something. Give them something actually INTERESTING and stimulating to do. Probably the list will need to be shorter, like 3 things. Make sure the last activity is highly preferred so they end on a good note. Have an activity that's kind of your "when you finish the list, this is the awesome thing he'll want to do" like playing nintendo or watching junkie cartoons or making a rootbeer float or something. 

So yeah, I would probably talk with the supervisor about going to 1:1 for a few weeks to see how that rolls. Then they know it's a privilege. But to have that work, the activities with the behaviorist have to be high value. They don't seem to be seeking her or motivated. When these kinds of interactions are done right, the dc looks FORWARD to the worker coming and runs to see them. If the dc are satisfied within themselves, it seems like you need to get them jolted into realizing they can have relationships besides with themselves, real relationships.

 

Edited by PeterPan
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To plan the activities, go back to my lists. And remember, I'm talking brief, clear expectations. Like when I say Charades, it's not if we want to. It's each person will do 3 cards and then we're done. And you stop even if they're having a good time, because it was never about the fun but the DEMAND. So you have to make the demand very clear. That's why picking up the floor can work. Did the supervisor or worker take time to figure out what motivates them? This is what ALL excellent workers will do. They want to know what motivates the dc, because they can use that to pair and to help the dc meet demands.

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The other thing I've been thinking about with my ds, that you could think about with your twins, is the way non-verbals help in that. So when you have these behavior issues you have a control dynamic. They may be fighting for control or they may already have some kind of control pattern. But to bring in a 3rd person, now you have this really complex 3-way dynamic, everyone looking for control, and their deficits in non-verbals and language are going to show up. So they're going to use other, inappropriate ways to get control. 

So that's why I'm thinking first build their ability to have calm, compliance, non-controlling relationships with the worker INDIVIDUALLY using their language and non-verbals, then try putting them back together, all three. It's a really hard dynamic to do it with multiple people. And maybe they're ready, but it could be an analysis. And at the very least, maybe it's comforting to them so it's a privilege you could remove to get control. And if you lose your worker, then you could know that with the next worker, to tell her that she always has the option to send out the one making a fuss. It can be a clear rule stated upfront--Working with me is awesome but if you can't work nicely together you'll only get to work one at a time and the other will be out hoeing weeds with Mom.

If my ds has significant behaviors or attacks a worker, I usually lose them. Maybe you won't lose this worker, but I'm just saying don't be shocked. That was a thread to them and their personal safety to have kids brandishing knives. Even if she doesn't quit immediately, it's now on her mind that she'd rather not be there. If she comes back, that's something to kabosh HARD. Doesn't matter what the kids want at this point, because there has to be enough structure that everyone is safe. And if she quits, you might just wait, get meds, then try the worker again. Or call the supervisor, tell her what happened, and say you're pausing till you put them on meds. That would give the poor worker an out. 

Edited by PeterPan
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It also occurred to me that it might be beneficial to separate them, so that one twin has one on one time with the helper, while the other has one on one time with you. That does not give you respite, but it may accomplish other goals. Such as the boys operating independently from one another. And you having focused time with each of them alone. 

Or you could do a combination, where one is alone with the helper for 30 minute, then both together with the helper for an hour, so you get time alone, then the other gets time alone with the helper.

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1 hour ago, CuriousMomof3 said:

Whether you do it in a more structured behaviorist manner, with tools like lists as Peter Pan suggests, or a little more organically which is more my style, the idea is the same.  

What you’re describing is what all my workers do. They always do just pairing the first session and they start every session joining my ds in what he’s already doing or what he brings them to do. 

For op remember babysitting would be ignoring while on phone or doing only what dc wants. Instead we’re finding how much the dc can comply, using lots of breaks to stay calm, and slowly increasing the demands. It’s all math and data. It can look like very little when it’s about getting them right where they are and stretching.

It has taken over a year (closer to 1 1/2) on stuff to keep ds stable to RESET his expectation of what he could do and how he could be. He’s in a session right now and you can see his realization of what we expect and his ability to get there is high. Growth plus stabilizing body plus experiences realizing he can, resetting his norm for himself. 

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FASD families / foster parents I have been aware of have sometimes had a “ground base. “. When not doing a specific agreed task / activity, the dc must be at the safe ground base ( where there could be safe toys or books or craft project to keep busy with) because of risk of things like knife drawer...  

Emphasis has tended to be moving toward some basic potentially employable skill, ability to follow direction, self care...   

Artist study is not really on the table.  Though maybe your twins are less severely impaired...

A friend of ours has an FASD later teen boy right now... it’s very difficult, a lot of worry about what he’s going to be able to do.  He was adopted as the parents already have grandchildren older than he is, and physically keeping up with him as they age is hard.   

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1 hour ago, Pen said:

FASD families / foster parents I have been aware of have sometimes had a “ground base. “. When not doing a specific agreed task / activity, the dc must be at the safe ground base ( where there could be safe toys or books or craft project to keep busy with) because of risk of things like knife drawer...  

What an interesting point. My ds has places he goes when he needs to feel safe/calm and he usually has things in them he does that help him feel calm. And sometimes we accidentally fluff that or mess it up (moving things out to clean and not getting them put back, whatever) and he can't self-advocate and fix it. 

What happened with us is that I tried to set up calming spaces for ds with his office, here or there, and I couldn't figure out why he wouldn't use them. But he does what he does, not what the paper from some OT says he should do, kwim? Like for him, lining things up is intensely calming, so I buy little tubs of things to line up. I just bought him a whole bunch of boxes of uber cheap knockoff kapla blocks. They're really dreadful and light but he just uses them to make forts and trenches=lining things up. 

So now ds has Area 51, which is his calming area with military stuff he's setting up, forts, trenches, foxholes, whatever. 

I don't know, I want to observe and ponder a while. Part of what happens in autism is they struggle with leisure skills. So that ground base can be a place, but also it happens naturally in autism if the kid has this thing he does. Like for my ds it's tv. When he's overwhelmed, tired, bored, whatever, he's gonna hit the recliner. Unless he's SO BAD that he's hiding in a closet, he's probably in the recliner. That in a sense is his ground base. But it's also not really the ground base you'd choose either. And I'm not saying it is a ground base, but it's just interesting to think of his patterns in terms of that and whether there's something functioning as that or whether having that would be helpful. I think having places they retreat to that they feel calm in are good. We spend a lot of time pairing spaces with good vibes, good memories. 

The worker could set up the table as a ground base and take them over one at a time to work while having the other work on independent work skills, waiting skills, whatever.

Somehow the worker let things get out of control, with no clear expectations. She should have been saying when it would end, using a timer, telling them what was next, giving more structure. Kids can't work with entropy. There's even a way to do it quietly, with no timers, where you make it look kind of child led but it's still interactive and kind of nudged. Our behaviorist just has this very quiet, non-controlling way about her. It's funny. We've had some high control workers too. Our last was previously a school sub, studying OT, maybe a bartender, I don't know. She had a pretty firm way about her. Variety is good I think. It's not safe if our kids only work with one kind of person and won't modulate themselves and comply with the rest. It's how we got pitted in our home, with ds thinking he only had to obey the biggest/strongest person. That was NOT SAFE, ugh. 

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1 hour ago, Pen said:

ground base.

Do you think the concept deserves double in a homeschool setting? So you'd have a ground base in the classroom and a ground base around the house? 

I have someone hopefully selling me an old retro chair, something kinda fun, and I think I was thinking of it that way, sort of the my space in our office, I can go there and feel really good. 

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27 minutes ago, PeterPan said:

Do you think the concept deserves double in a homeschool setting? So you'd have a ground base in the classroom and a ground base around the house? 

I have someone hopefully selling me an old retro chair, something kinda fun, and I think I was thinking of it that way, sort of the my space in our office, I can go there and feel really good. 

 

I guess it depends on your set up and situation.  🙂 

asd and FASD probably have some overlap, but also have significant differences.

 

the point of the base was primarily maintaining adults in control - not child self calming   

 

https://sites.duke.edu/fasd/chapter-6-the-fasd-student-and-behavioral-issues/

 

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Thank you everyone for your advice. I will reply more in depth when I have time latter today.

only one twin has funding for the worker. So they cannot take turns. It would be just twin 1 or both of them. I was really hoping it could be both. It was twin 1 who did all the dangerous behaviour.

we have refused respite on other occasions because of their need for external regulation. These twins would not function at all in a regular classroom. They need someone externally regulating them.

the worker is 25ish studying her masters in teaching and has just worked 6 months as a teacher aid in a primary school. So not very experienced. Dad said she thinks the worker looked a bit afraid to tell someone else’s kids off. There is no supervisor. I am employing the worker directly though the funds do not come form me but is paid directly to her.

the twins are not medicated for several reasons. They are participating in a program that is trying to focus on self regulation through brain rewiring,We are currently working closely with an OT to learn body awareness and breathing, all their bio siblings are medicated and it hasn’t improved their behaviour. Medication is a last resort and will mean the twins will never learn self regulation. We are working very very hard on this specific thing.

 

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The video above maybe more for the people reading this who haven’t had much dealings with FASD because it isn’t the same as various other LD situations many of us are dealing with (though some of us with adopted children could be dealing with mild FASD and not know it). 

 

The video below more possibly for @Melissa in Australia, as some ideas that might apply to the person coming to help the twins (or you for that matter):

 

Edited by Pen
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possibly helpful ... someone able to look back at childhood, teen, early adult FASD and explain some from a personal perspective ... what he wanted, needed, but could not articulate...  (I find it very emotionally moving also.  And as Myles resembles very much our friends ‘ son , and also to some degree my own... it is especially important to me right now.  Makes me wonder what I can do with this information to perhaps make things better...) 

Edited by Pen
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4 hours ago, CuriousMomof3 said:

In my experience, a period of medication can help kids learn what their body and mind feel like when it's calm, and engage in instruction around strategies for self regulation. If the medication then needs to be stopped, the child has the skills and the motivation to work on self regulation.  

 

Is there a medication shown to successfully work this way for FASD?   And if so, what?

 

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I think that part of the medication thing is a cultural difference. USA is pretty well known internationally to turning to medicating kids as a first option. Other countries tend to look as medication as a last resort. I have been offered medication by the peadiartician for them but after very careful consultation with the whole team of professionals working with the twins the peadiatrican agreed that at the moment it is not something to try. this doesn't mean we will not be looking at it again in the future. He in fact recommended we try  the brain training thing we are working on at the moment- something that some neuropsycologests that he works with have developed.

Edited by Melissa in Australia
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16 hours ago, Pen said:

 

I guess it depends on your set up and situation.  🙂 

asd and FASD probably have some overlap, but also have significant differences.

 

the point of the base was primarily maintaining adults in control - not child self calming   

 

https://sites.duke.edu/fasd/chapter-6-the-fasd-student-and-behavioral-issues/

 

thank you for the link. I found the information helpful

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4476607/

good article, IMO, re medications and supplements...    (I’d perhaps try choline (part of BComplex iirc) and maybe vinpocetine with FASD.   based on the studies mentioned in the article.) There doesn’t appear to be research showing that most medications for LD type stuff work.  I think I saw one possible positive indication for Risperidine short term adjunct to therapy but not clear, and not sure I remember that right.  A lot of typical (adhd etc) meds appear in clinical trials to make FASD worse. 

I’d probably be looking at what tends to help with neuron damage for other reasons (TBI, MS, etc) ...  and what perhaps could be used by body to build nerves, remylenate. Etc.

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4 hours ago, Pen said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4476607/

good article, IMO, re medications and supplements...    (I’d perhaps try choline (part of BComplex iirc) and maybe vinpocetine with FASD.   based on the studies mentioned in the article.) There doesn’t appear to be research showing that most medications for LD type stuff work.  I think I saw one possible positive indication for Risperidine short term adjunct to therapy but not clear, and not sure I remember that right.  A lot of typical (adhd etc) meds appear in clinical trials to make FASD worse. 

I’d probably be looking at what tends to help with neuron damage for other reasons (TBI, MS, etc) ...  and what perhaps could be used by body to build nerves, remylenate. Etc.

I found that article very interesting. Thank you.

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8 minutes ago, CuriousMomof3 said:

I would agree that ADHD meds, particularly stimulants, can often be problematic for kids who don't just have ADHD, because of the likelihood of intensifying anxiety, disregulated mood (particularly mania or hypomania), or neurological symptoms like tics. 

The thing is, it's pretty predictable if you run genetics.

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10 minutes ago, CuriousMomof3 said:


Again, not encouraging medication, just interested in this line of discussion.

I would agree that ADHD meds, particularly stimulants, can often be problematic for kids who don't just have ADHD, because of the likelihood of intensifying anxiety, disregulated mood (particularly mania or hypomania), or neurological symptoms like tics.  That doesn't mean they can't ever be used, but I'd suggest being super cautious.  The complex kids I have seen who have responded to meds usually are medicated by a psychiatrist (not a pediatrician) with medication that matches the symptom(s) that is currently causing the greatest difficulty.  So, for example, a kid who is really disregulated and aggressive might get Risperdal or another atypical antipsychotic.  A kid with mood swings may get a mood stabilizer.  And a kid with difficulty with sleep that's contributing to impulsivity during the day might get Clonidine.  Of course, many kids have multiple symptoms, but it's not uncommon for one symptom to be the one that pushes the parent to try medication. 

However, I haven't worked with many kids for whom FASD is the only issue.  Most of the kids I've worked with who have confirmed FASD have either been parented by someone who is using heavily, or have experienced multiple separations and disruptions in care, or have been institutionalized.  These things leave scars on kids, such as PTSD or RAD.  In addition, many of the kids I've seen with FASD have either been exposed to other substances in utero, or have birth parents who are dually diagnosed and also have diagnosed or undiagnosed conditions like bipolar that can be inherited.  Given all that, it's hard to sort out whether they FASD that mimics a mood disorder, or FASD and a mood disorder, or FASD and PTSD (although sometimes specific symptoms like flashbacks can make that more clear) rather than FASD that mimics PTSD.  

Finally, I want to be clear that I'm not saying that there's some medication that will magically improve thinking, teach kids cause and effect, and cure behavior problems.  The changes I have seen have been small but significant changes.  The kid who previously went from 0 to 100 in a hearbeat, might give you a few seconds warning, which lets you move siblings or classmates to safety.  Or the kid who could be trusted to sit for 30 seconds with a fun activity, can now last 3 minutes, which means mom can pee.  

Again, my kid is off psychotropic meds due to side effects.  So, I am certainly someone who sees both sides.  

the twins also have all the highlighted. they are not violent at all,   and with all the work that the whole team of professionals have been doing ( plus our family) they can now last up to 5 minutes and if they ave r very engaged almost 20 minutes on an activity - especially if they are redirected by gentle taps on the arm etc.

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1 hour ago, Melissa in Australia said:

the twins also have all the highlighted. they are not violent at all,   and with all the work that the whole team of professionals have been doing ( plus our family) they can now last up to 5 minutes and if they ave r very engaged almost 20 minutes on an activity - especially if they are redirected by gentle taps on the arm etc.

 

Of the FASD children I’ve met and known that they had FASD, only one has had violent tendencies.  

If anything the ones I have met have tended to be the opposite— overly and indiscriminately “loving” — touchy-feely , lacking a sense of close friend versus stranger, and so on.   

I am currently dealing with the son of our friends who wants a closer friendship with my son than my son wants right now, who is calling me maybe 6 times per day, my son, I guess, even more than that...  

Trying to negotiate between my son’s feelings, the other boy’s, his family...  I’ve ended up talking with the other boy quite a bit lately.

It’s complicated. 

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3 hours ago, CuriousMomof3 said:


Again, not encouraging medication, just interested in this line of discussion.

I would agree that ADHD meds, particularly stimulants, can often be problematic for kids who don't just have ADHD, because of the likelihood of intensifying anxiety, disregulated mood (particularly mania or hypomania), or neurological symptoms like tics.  That doesn't mean they can't ever be used, but I'd suggest being super cautious.  The complex kids I have seen who have responded to meds usually are medicated by a psychiatrist (not a pediatrician) with medication that matches the symptom(s) that is currently causing the greatest difficulty.  So, for example, a kid who is really disregulated and aggressive might get Risperdal or another atypical antipsychotic.  A kid with mood swings may get a mood stabilizer.  And a kid with difficulty with sleep that's contributing to impulsivity during the day might get Clonidine.  Of course, many kids have multiple symptoms, but it's not uncommon for one symptom to be the one that pushes the parent to try medication. 

However, I haven't worked with many kids for whom FASD is the only issue.  Most of the kids I've worked with who have confirmed FASD have either been parented by someone who is using heavily, or have experienced multiple separations and disruptions in care, or have been institutionalized.  These things leave scars on kids, such as PTSD or RAD.  In addition, many of the kids I've seen with FASD have either been exposed to other substances in utero, or have birth parents who are dually diagnosed and also have diagnosed or undiagnosed conditions like bipolar that can be inherited.  Given all that, it's hard to sort out whether they FASD that mimics a mood disorder, or FASD and a mood disorder, or FASD and PTSD (although sometimes specific symptoms like flashbacks can make that more clear) rather than FASD that mimics PTSD.  

Finally, I want to be clear that I'm not saying that there's some medication that will magically improve thinking, teach kids cause and effect, and cure behavior problems.  The changes I have seen have been small but significant changes.  The kid who previously went from 0 to 100 in a hearbeat, might give you a few seconds warning, which lets you move siblings or classmates to safety.  Or the kid who could be trusted to sit for 30 seconds with a fun activity, can now last 3 minutes, which means mom can pee.  

Again, my kid is off psychotropic meds due to side effects.  So, I am certainly someone who sees both sides.  

 

Logic says it must be true that FASD and PTSD will often overlap due to either being stressed by moves out of original household or very often addictions and results of that if still in the original household.  But I’m not sure that psychotropic pharmaceuticals  are particularly useful for PTSD either, though I know a couple are specifically approved for it. (Unlike with FASD where it isn’t clear to me that any drug is approved for FASD in USA) 

I certainly admit to a strong bias in favor of vitamins, nutraceuticals and nootropic supplements if something like that is used at all. 

 

More FASD films— what at least these people feel — and hopeful to see progress, I think

 

 

 

 

An alternative view on ADHD Scattered: How Attention Deficit Disorder Originates and What You Can Do About It https://www.amazon.com/dp/0452279631/ref=cm_sw_r_cp_api_i_kLLqDbGB6VQQG

 

Not sure these links would work for others: 

Scattered Minds #hoopladigital
https://www.hoopladigital.com/title/12315241

Scattered #hoopladigital
https://www.hoopladigital.com/title/11556076

 

ADHD has a far better track record of showing usefulness of psychotropic pharmaceuticals. But the author above , Mate, who has ADHD as do 3 of his kids is questioning whether pharmaceuticals is really the right approach...

What he seems to think is the right approach fits well with what Myles, in the long video a few posts ago, said he needed, but could not express his need.  As best I understand the videos and the book.

 

Mate has his own videos too btw.  

 

Puryear whose book was helpful to me with ADHD ish struggles also tended to be more on the non Rx side.  Though Hallowell whose work I also appreciate tends to be more pro Rx.  

 

I’d like to see some of Amen’s  Spec scans to see if the brain shows healing after Pharmaceuticals. 

Edited by Pen
No diagnosed adhd so added ish. And nutraceuticals
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Op says the kids were brandishing knives. That is end of the line. Safety goes to the top of the list. If their social thinking does not allow them to realize that's NOT AN OPTION, then they need something that keeps them safe and keeps their workers safe, something that works. There is no intervention when the worker is worried about their safety. Make safety the TOP priority and then everything else will fall into place. So the only real question with op's ds is whether it was impulsivity (which it sorta sounded like) or aggression (my ds). And then for impulsivity it's ADHD meds or a trial of tyrosine has research behind it, so you could try it, sure. But that would be super short leash. No one can work effectively with kids till they are SAFE to work with. And if op is like 80,000 things are happening and I don't know where to start, well SAFETY is where you start.

Safety is body calm so someone can work with you. Safety is ability to communicate independently so you can self-advocate for what you need or for problems you're having. My ds was not safe with his narrative language deficits, because he couldn't tell me what happened, if someone had abused him. Working on narrative language is part of safety. But don't think of it in terms of 80,000 things. Start with SAFETY. It's a big movement in one of the autism communities in a major city near us. They have a safety council and have been putting on all kinds of stuff. It was when I finally realized the connector between a lot of my worries for my ds. They all boiled down to SAFETY. So now I go into IEP meetings and I say THIS HAS TO BE A GOAL BECAUSE WITHOUT IT MY DS ISN'T SAFE. Everything flows back to safety. Safety for the worker, safety for the dc. 

Edited by PeterPan
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1 hour ago, PeterPan said:

Op says the kids were brandishing knives. That is end of the line. Safety goes to the top of the list. If their social thinking does not allow them to realize that's NOT AN OPTION, then they need something that keeps them safe and keeps their workers safe, something that works. There is no intervention when the worker is worried about their safety. Make safety the TOP priority and then everything else will fall into place. So the only real question with op's ds is whether it was impulsivity (which it sorta sounded like) or aggression (my ds). And then for impulsivity it's ADHD meds or a trial of tyrosine has research behind it, so you could try it, sure. But that would be super short leash.

 

 

As a general matter I agree that safety needs top priority.

Melissa thought the knife drawer was locked in a child proof way. Clearly something went wrong with that. (My own observation if that children are often better than adults at getting into “child proof” containment. ) 

Safety and also calm were reasons that the FASD families I knew were using a home base system ( because the Hays had used that successfully with their 11 dc, 9 with FASD and it was a model of success that could be followed   ). The FASD children have very limited ability to keep groups of instructions in their head.  So an “always be at the home base table area” basic rule was something the FASD children could handle and be okay with—  unless specially told to do something else (which would be just one thing at a time with guidance, so as  not to overload them ) was manageable.  

 

I lost the link for the following image, but you can find it and others similar to it if you Hoogle FASD brain images. Despite such similar acronym letters as ASD, it isn’t the same thing.  Despite often similar behaviors to adhd it isn’t the same thing. 


 

What is Fetal Alcohol Syndrome

There’s damage to brain.  It isn’t always (probably not even usually) that hugely visible on scans.  But alcohol damages brains. Neurons. There is damage to myelin sheathes of nerves, almost always in FASD, as I understand it.  (The film Jackie and Hilary  (Or reverse?) might be interesting to show a depiction of mental and behavior changes happening with someone with demyelination due to MS happening— that also may look like ASD or ADHD but isn’t.) 

 

I think saying here’s what worked for my child with ASD and ADHD so that’s what you need (Melissa needs) to do for your (her) child may be a very wrong approach with regard to FASD .  

Yes, there’s a lot of great research about Tyrosine and ADHD .  But while FASD outer symptoms may resemble ADHD they are not the same.  There is afaik currently Zero research  to show that Tyrosine would help with FASD .  Maybe it would.  Maybe it’s safe enough to experiment with.  Or not.  I’d certainly want to very carefully research what is known about its effects in children with FASD before trying it. Perhaps To research what’s known about increasing dopamine in children with FASD . 

OTOH there is some very excellent research to show that Choline  is likely to help (you can probably google scholar it) in FASD (though more so showing it to help hugely at around age 3 and younger) and it would be far more worthwhile imo in going to what has research behind it for the condition that the dc seem to have. Rather than to treat them for something that helps a different thing that someone else’s child has.   Or at least I personally would look at nutraceuticals that seem to help FASD and other conditions with similar underlying damage.  As well as perhaps “anti-alcohol antioxidants “ and other such things. 

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