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Melissa in Australia

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“When safety is established, growth takes place.”

A quote from the Gabor Mate book— though it is dealing more with the *emotional*  level of safety than with the physical level. 

I think it is likely applicable to children like mine or @Melissa in Australia‘s who come from a trauma background  — even if ADHD is not a diagnosis.  

I particularly like it as read by his son Daniel. Because I know that there was a lot of conflict as between Daniel and his parents, so his voice reading, I dunno, makes it seem an extra level of meaning for me

 

In some ways, as I read it, it is also specific recommendations for How to achieve the frequent suggestion of putting the relationship with a child first (first before school before conflict before achievement before sports before extracurriculars).   And some specific suggestions for parental self regulation, even before trying to deal with the child learning to self regulate... 

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26 minutes ago, CuriousMomof3 said:

But, as the other thread made clear, the rest of our family probably all has a little bit of PTSD after the events of this spring, and I am far more likely to try something on them! 

 

Meditation, mindfulness could be another good route...

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21 minutes ago, Pen said:

“When safety is established, growth takes place.”

I haven’t read this book and clearly I should, but of course for us this brings up the question of how to establish that for my kid for whom the medical part of his trauma will probably continue indefinitely.  

Quote

A quote from the Gabor Mate book— though it is dealing more with the *emotional*  level of safety than with the physical level. 

I think it is likely applicable to children like mine or @Melissa in Australia‘s who come from a trauma background  — even if ADHD is not a diagnosis.  

I particularly like it as read by his son Daniel. Because I know that there was a lot of conflict as between Daniel and his parents, so his voice reading, I dunno, makes it seem an extra level of meaning for me

 

In some ways, as I read it, it is also specific recommendations for How to achieve the frequent suggestion of putting the relationship with a child first (first before school before conflict before achievement before sports before extracurriculars).

 

I feel feel like this, but simultaneously feel that my kids need the structure and predictability that sports (OK and YK) or math (MK) can provide.

I think a lot of people must think I push math on MK, but the reality is really different.  His obsession with Khan comes from the fact that it is the same, and he can control it.  When you’re 8, and completely alone and hungry and in pain, the fact that you can walk to the library and turn on the computer and it will be the same screen and the same points that were there in your classroom with the teacher who made you feel a little safe that’s something.  

Or when you’re 8 and you wake up in a hospital bed with wires and tubes all over you and no faces you recognize and no possessions the fact that you can ask Child Life for a tablet and when you turn it on all your points are there, is something.

Note that I am reacting to a quote in isolation, but just saying that to me that question of whether to value school vs. safety is not really black and white.

Quote

  And some specific suggestions for parental self regulation, even before trying to deal with the child learning to self regulate... 

 

Note: I may well delete this so please don’t quote.

Edited by CuriousMomof3
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18 minutes ago, Pen said:

 

 

Meditation, mindfulness could be another good route...

 

Yep, we also heard from the therapist about potential times for OK, and YK which is good.

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Well, again, I think he really means emotional safety.  

And I don’t think it means don’t do sports. I think it means don’t put sports or achievement in sports above emotional health.  Try to have parents as the center for stability and emotional regulation...

Or don’t mistake a use of something like math or sports for supplying the needed parenting .  

“When you were a child, Who did you turn to for comfort and security?” Answer should be, if possible, ones parents.  

Math and sports would be better to have to turn to for comfort and security than nothing though.  And better than many other possibilities that kids might turn to .  

It might perhaps mean fewer sports though or less hectic schedules or some way to have some low key and non stressful time together .   So that parents can be the main source of emotional security, with things like sports or math being interests, not life raft.  

 

As I currently understand it.

Edited by Pen

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Just now, Pen said:

 

Well, again, I think he really means emotional safety.  

And I don’t think it means don’t do sports. I think it means don’t put sports or achievement in sports above emotional health.  Try to have parents as the center for stability and emotional regulation...

Or don’t mistake a use of something like math or sports for supplying the needed parenting .  

“When you were a child, Who did you turn to for comfort and security?” Answer should be, if possible, ones parents.  

Math and sports would be better to have to turn to for comfort and security than nothing though.  And better than many other possibilities that kids might turn to .  

It might perhaps mean fewer sports though or less hectic schedules or some way to have some low key and non stressful time together .   So that parents can be the main source of emotional security, with things like sports or math being interests, not life raft.  

 

As I currently understand it.

 

Can you unquote me?

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4 minutes ago, Pen said:

 

Well, again, I think he really means emotional safety.  

And I don’t think it means don’t do sports. I think it means don’t put sports or achievement in sports above emotional health.  Try to have parents as the center for stability and emotional regulation...

Or don’t mistake a use of something like math or sports for supplying the needed parenting .  

“When you were a child, Who did you turn to for comfort and security?” Answer should be, if possible, ones parents.  

Math and sports would be better to have to turn to for comfort and security than nothing though.  And better than many other possibilities that kids might turn to .  

 

Well of course, but that’s a process that takes time.  Kids don’t learn how to be parented overnight.  We are making progress.  

And for us, part of what my kids need is 1:1 time, which, since they out number us and we also need to do things like sleep and put food on the table means that someone needs something safe to do.

4 minutes ago, Pen said:

It might perhaps mean fewer sports though or less hectic schedules or some way to have some low key and non stressful time together .   So that parents can be the main source of emotional security, with things like sports or math being interests, not life raft.  

 

As I currently understand it.

 

8 minutes ago, Pen said:

 

Well, again, I think he really means emotional safety.  

And I don’t think it means don’t do sports. I think it means don’t put sports or achievement in sports above emotional health.  Try to have parents as the center for stability and emotional regulation...

Or don’t mistake a use of something like math or sports for supplying the needed parenting .  

“When you were a child, Who did you turn to for comfort and security?” Answer should be, if possible, ones parents.  

Math and sports would be better to have to turn to for comfort and security than nothing though.  And better than many other possibilities that kids might turn to .  

It might perhaps mean fewer sports though or less hectic schedules or some way to have some low key and non stressful time together .   So that parents can be the main source of emotional security, with things like sports or math being interests, not life raft.  

 

As I currently understand it.

 

Well yes, but learning how to accept that from parents takes time.  It also takes hard work, and for MK I don’t see how that level of work is sustainable 24/7.  

Also, my kids need 1:1 with us (the parents) and since they out number us, and we also need to do things like sleep and put food on the table they need something to structure their time.

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I think where it would be an issue would be if there’s stress over trying to get to sports, if it became a conflict to get out door on time with all the gear and food etc, or stressful to manage schedule conflicts and logistics logistics. So that instead of it being a relaxing fun thing to do it became something adding to stress or anxiety...

 Or if math became a stress for MK rather than a source of joy.  

...

or if LEGO or similar became too many pieces or too small for little fingers to handle, and a source of stress rather than fun and brothers cooperative play. 

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1 minute ago, Pen said:

I think where it would be an issue would be if there’s stress over trying to get to sports, if it became a conflict to get out door on time with all the gear and food etc, or stressful to manage schedule conflicts and logistics logistics. So that instead of it being a relaxing fun thing to do it became something adding to stress or anxiety...

 Or if math became a stress for MK rather than a source of joy.  

...

or if LEGO or similar became too many pieces or too small for little fingers to handle, and a source of stress rather than fun and brothers cooperative play. 

 

Absolutely and we watch for that really carefully.  

My hope is that the math thing will slow way down.  He’s bright, and I assume will always be “good” at math, but I hope that as he learns to enjoy other things, and find peace in not doing anything that will change.

And we are making steps.  The fact that my kid can lie on the floor and play legos is a miracle, but yes he still needs the structure of lots of directions and complexity because it’s when he thinks the hardest that he forgets himself a little.

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7 minutes ago, Pen said:

Or if parents were too stressed by the extracurricular schedule.  

 

If I am stressed by a schedule it’s the medical schedule. We’re out the house for medical stuff about 18-22 hours a week.  During the school year all of YK’s activities and most of OK’s are immediately after school on campus.  

Plus, I need some consistency, sitting on the sidelines of a kid baseball game with my friends is that for me.

Not that I am not stressed, but baseball or soccer isn’t the cause.  It sounds like you’ve had some experience with kid trauma, just for context we’re 8 weeks today from coming back home from the last hospital stay so we’re still kind of figuring stuff out.

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19 hours ago, Melissa in Australia said:

for the twins they are just so impulsive.

That's how I took it, yes. So have you talked with the ped about ADHD meds? Or tried tyrosine? 

19 hours ago, Melissa in Australia said:

that is why the need constant full time close supervision.

So I don't know FASD, but I'm going to go back to why is it blame the mom, why not put it back on solving the impulsivity? I don't think it's diagnostically correct to say someone has FASD (or ASD or whatever) and therefore doesn't need their ADHD treated. They used to say that, sure.

If there are mental health concerns, like a family history of bipolar or schizophrenia, you could run genetics before trying stimulant meds, definitely absolutely, highly recommend.

 

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18 hours ago, Pen said:

 

 

Meditation, mindfulness could be another good route...

Are these kids getting OT? There are a whole bunch of inter-related options they could be taught for calming strategies and self-awareness, but Pen is very right that these would be a high priority to work on. You can stack them with other strategies like meds/biomedical, where meds give you 50-70% and the mindfulness and self-monitoring strategies (zones of regulation, interoception, how does your motor run, free charts from Amy Laurent, etc.) would give you another 30% and you'd start to have a complete child.

Usually that's an OT, not an untrained worker. However I say that and really the Interoception curriculum is able to be implemented by untrained people, absolutely. If she comes back and if she's game to implement lessons, that would be something to hand her. Or buy it and do it yourself.

The success you have with more challenging kids is because a LOT OF PIECES come together. It's not any one thing. It's not just meds or just cognitive strategies or just environmental controls or just ABA workers or whatever. It all comes together, with one thing putting the dc in a better place to receive the next thing. 

Here's some of the Amy Laurent stuff. It's what I'm getting ready to use with my ds this year.http://amy-laurent.com/my-energy/  Like I said, I personally would start with interoception and body scans and just increasing awareness first. Then you could have some strategies like a freeze/scan, morning check-ins, whatever. You need some common language and awareness, so when they're getting elevated (heart rate, feet moving fast, whatever), they NOTICE or at least realize what you're saying when you say something. And these are strategies that cross diagnoses. It's good for kids who are needing to work on self-monitoring and self-awareness irrespective of diagnosis. When I went to a counselor and got work for my own childhood trauma, what did he have me doing? Body scans. So it's all good.

Here's the link for Kelly Mahler's new online course on Interoception. It would be a place to start https://www.kelly-mahler.com/product/three-steps-to-improving-interoception/

Edited by PeterPan
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Interoception as @PeterPan suggests above could be very helpful, yes.  Once upon a time, a little girl with likely FASD (or maybe a drugs exposure baby, I don’t know) asked me if I’d adopt her.  I think if I’d known about interoception at that time, I might have felt like I could have handled it.  She was still missing basic connection with her own body functioning.  And I didn’t have knowledge then about anything that might help.  I suspect interoception would have. 

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Don't know if the dc have experienced trauma, but trauma results (or can result in) dissociation and turning off body signals. So doing body scans and reconnecting with your body, FEELING things, self-monitoring, is part of healing it. You have books like Levine's foundational work Healing Trauma and Van Der Kolk's summary book of the research. 

So basically it can be good on multiple levels and you won't know till you get it. Can be common language, can be dealing with part of their disability, can be reversing some of the effects of trauma. 

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1 minute ago, PeterPan said:

Don't know if the dc have experienced trauma, but trauma results (or can result in) dissociation and turning off body signals. So doing body scans and reconnecting with your body, FEELING things, self-monitoring, is part of healing it. You have books like Levine's foundational work Healing Trauma and Van Der Kolk's summary book of the research. 

So basically it can be good on multiple levels and you won't know till you get it. Can be common language, can be dealing with part of their disability, can be reversing some of the effects of trauma. 

 

I think it can pretty much be assumed that all adopted children have at least the traumas of separation from bio family plus the reasons for that plus change into new family.  

EMDR probably also worth considering since it would not take a lot of cognitive ability from the dc.  

Or tapping, emotional freedom techniques...

 

Did I link this yet?

for @Melissa in Australia

Alphabreaths: The ABCs of Mindful Breathing https://www.amazon.com/dp/1683641973/ref=cm_sw_r_cp_api_i_pLirDbE6CW2S5

 

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For clarification the other two are my other kids, who I sometimes refer to as OK (oldest kid), and YK.  They are my bio kids, and have always been pretty typical, happy kids.  

But we’ve had a rocky 7 months.  We found out about MK’s situation in November and he came to live with us right before Christmas, and got progressively sicker until we took him out of state for what was supposed to be a consult but turned into a six week stay in the PICU.  DH and I both went on that trip.  They were in our home with Grandparents and were safe and well cared for during our absence but it was still hard, and there are also all these things, like the idea of parents dying and kids dying that MK has introduced into their minds.

So, they are both being needier than usual and expressing it in ways that are typical for them but more extreme. YK, for example has always been kind of focuses on the idea of fairness, and now can sort of hyper focus on anything he perceives of as unequal.  OK has always been a peacemaker and it’s ramped up. 

I started another thread in Chat about YK’s whining, and people point out rightly that I need to think of them as traumatized by all this too.  Which makes sense, but it’s not the same kind of trauma that MK has experienced and we aren’t addressing it as intensively.  We’ve increased opportunities for them to spend time 1:1 with us, and they’ll both start psychotherapy once a week when school restarts, and we have made sure that there is lots of consistency.  I am happy to add some nutritional support, but I also think that some of what they need is time.  

MK (my future homeschooler with a disability) is an enormously traumatized kid and gets intensive therapy.  He gets OT, but not as much as he would probably benefit from just because of time constraints.  Right now his PT is working a lot on pain management, which has some overlap with the sensory work a good OT would do, but his OT is more focused on figuring out to do things that he used to be able to do with a body that doesn’t work the way it used to.  

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18 minutes ago, Pen said:

 

I think it can pretty much be assumed that all adopted children have at least the traumas of separation from bio family plus the reasons for that plus change into new family.  

EMDR probably also worth considering since it would not take a lot of cognitive ability from the dc.  

Or tapping, emotional freedom techniques...

 

Did I link this yet?

for @Melissa in Australia

Alphabreaths: The ABCs of Mindful Breathing https://www.amazon.com/dp/1683641973/ref=cm_sw_r_cp_api_i_pLirDbE6CW2S5

 

 

MK is working towards EMDR, on things his therapist thinks he needs in place to be able to tolerate EMDR.

EMDR, as I understand it, would be more than my other kids need.  They aren’t adopted, and while MK’s situation been hard for them, it doesn’t rise to the same level as what MK himself has been through.

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3 minutes ago, CuriousMomof3 said:

MK is working towards EMDR, on things his therapist thinks he needs in place to be able to tolerate EMDR.

The counselor I used was trained in EMDR but cautious, didn't like it as well, because it has some inherent disadvantages. TRE=Trauma Release Exercises allow the person to release the stored sensations, trauma, pain, etc. without requiring them to re-experience it at all. That's what we did.

 

Edited by PeterPan
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9 minutes ago, PeterPan said:

The counselor I used was trained in EMDR but cautious, didn't like it as well, because it has some inherent disadvantages. TRE=Trauma Release Exercises allow the person to release the stored sensations, trauma, pain, etc. without requiring them to re-experience it at all. That's what we did.

 

 

Thanks!  

We switched him to this therapist about six weeks ago, and I really like her.  I can already see specific things that he has learned from her that have been helpful so I optimistic that it will be the right path for him.

 

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42 minutes ago, CuriousMomof3 said:

@PeterPanand @Pen , do either of you have experience with Image Rehearsal Therapy?  

 

Not I.

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Just now, Pen said:

@Melissa in Australia  possibly your twins could do this sort of thing:

https://youtu.be/_mX4JBBIcBk ?

 

Though, we just had a teen anxiety time with little working to relieve it before first Behind the wheel drive time.

tried breathing, tried tapping...   maybe it would be worse yet without?  I dunno.   

I, otoh, am less anxious with the professional behind the wheel session now happening than when I’m in the passenger seat with new teen driver .  

 

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2 minutes ago, Pen said:

 

Though, we just had a teen anxiety time with little working to relieve it before first Behind the wheel drive time.

tried breathing, tried tapping...   maybe it would be worse yet without?  I dunno.   

I, otoh, am less anxious with the professional behind the wheel session now happening than when I’m in the passenger seat with new teen driver .  

 

 

I am very glad I have 4 years to go before I have to worry about anyone driving in my house.  That sounds very anxiety provoking to me!
 

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14 hours ago, PeterPan said:

That's how I took it, yes. So have you talked with the ped about ADHD meds? Or tried tyrosine? 

So I don't know FASD, but I'm going to go back to why is it blame the mom, why not put it back on solving the impulsivity? I don't think it's diagnostically correct to say someone has FASD (or ASD or whatever) and therefore doesn't need their ADHD treated. They used to say that, sure.

If there are mental health concerns, like a family history of bipolar or schizophrenia, you could run genetics before trying stimulant meds, definitely absolutely, highly recommend.

 

 

 We ARE doing things to help with the impulsiveness. I mentioned some of them upthread. these include

a brain retraining program developed by a neuropsycologest who we give feedback to daily this was recomended by the peadiatrician who personally works with the neuropsycologest. it is something we are trying BEFORE re-looking at the possibility of medication.

vitamin supplements including fish oil as recommended by the Peadiatrician. 

Occupational Therapist who specializes in YOGA and breathing techniques to help twins with body awareness and calming strategies ( we have been only working with her for 1 month).

External regulation techniques that their Psychologist who has training  in  both play therapy  and trauma specific to children from foster care has educated us in. She comes and gives us fortnightly coaching.

As well as the Speech Pathologist who also has done some  training in Behavior therapy - as so many children with Speech problems also have behaviour problems resulting form their lack of ability to express themselves.

 so it is not like we are sitting back and not doing anything saying Oh well we have X diagnosis and so we won't bother . We have a whole team , we are working on it every waking minute. the whole team were consulted on if they thought meds were the way to go and it was decided by the team not yet. lets try these other things......

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

- she doesn't even know what they have. I know for a fact she refused to sign paperwork for OT and Speech for the twins when they came to live with us as she said there was nothing wrong with them. the reason though that she refused to give permission for angel flights for specialized treatment  for twin 1 to be able to walk was because she wanted to sue the angel flights if the plane crashed.  So glad we have guardianship  now and and can sign medical treatment permission.

I do however in my head blame her for the extreme neglect that the twins suffered- causing them to have significant global developmental delays in all domains,  the torture that they received that resulted in them having huge problems including PTSD, RAD  and the inability to acknowledge physical pain. They were removed from her care because of very valid reasons. they would not be alive if they hadn't been removed.

Edited by Melissa in Australia
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one thing the OT noticed last week when she was here was that twin 2 never seems to breath deeply at all. just shallow shoulder moving breathing - she said that he is therefor stimulating lower brain fight or flight ALL THE TIME - which would explain why he is so anxious and becomes dis-regulated so quickly. She will be making this a priority in the next few sessions.

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10 hours ago, Pen said:

@Melissa in Australia  possibly your twins could do this sort of thing:

https://youtu.be/_mX4JBBIcBk ?

the OT is trying something very similar. so far they cannot sit or lie still long enough for more than the first breath. they can be very silly sometimes in a way that only little boys can be.

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On 8/1/2019 at 1:46 PM, Pen said:

 

 

 

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

 

 

this is brilliant.. this really describes how the twins present

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@Melissa in Australia

One Willard type breath that I think didn’t make it into the ALpha breaths book was a “hot cocoa breath”.  A single breath, long and deep, simulating smelling (so breath in through nose not mouth) and savoring (so long and slow) the delicious smell of a cup of hot cocoa.  If they are capable of handling a cup of cocoa without danger, maybe they could start with trying it with the real thing.  

And maybe that’d give a single breath a short , but significant, benefit.  ???

 

If they can’t handle hot cocoa safely, maybe there’d be a less potentially dangerous alternative that would have smell they’d like to use.  (Fresh baked chocolate chip cookie?)   ???

 

maybe practice on such a breath could be interspersed with sipping the cocoa or eating bites of the cookie or whatever 

 

btw giggles and laughter are great, IME, very healing themselves 

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16 hours ago, PeterPan said:

That's how I took it, yes. So have you talked with the ped about ADHD meds? Or tried tyrosine? 

So I don't know FASD, but I'm going to go back to why is it blame the mom, why not put it back on solving the impulsivity? I don't think it's diagnostically correct to say someone has FASD (or ASD or whatever) and therefore doesn't need their ADHD treated. They used to say that, sure.

If there are mental health concerns, like a family history of bipolar or schizophrenia, you could run genetics before trying stimulant meds, definitely absolutely, highly recommend.

 

 

I think you are wrong in  assuming that “impulsive” = “ADHD.”

 

 

No one said don’t work on the impulsivity. 

Tyrosine and Choline are both present in certain foods.  I would feel very comfortable having / serving a lot of foods rich with both. 

I personally would feel much more comfortable supplementing Choline because of the research showing it helpful for FASD. 

Since dopamine and acetylcholine are in some ways opposite , I’d be personally very wary of possibly upping dopamine alone (via Tyrosine) in someone who, due to FASD, is likely low in Choline and acetylcholine. 

It isn’t a genetic thing, it’s what alcohol does structurally to brain

I don’t think running genetics will show the FASD damage any more than running genetics would show a skull fracture. 

But  that doesn’t mean one should not do what is possible to heal the neurons and brain (or other damage), as well as learn how to give external supports like the Morgan Fawcett video indicates he needs to function. 

ETA: And as best I can tell Melissa is working on both. 

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

 

 We ARE doing things to help with the impulsiveness. I mentioned some of them upthread. these include

a brain retraining program developed by a neuropsycologest who we give feedback to daily this was recomended by the peadiatrician who personally works with the neuropsycologest. it is something we are trying BEFORE re-looking at the possibility of medication.

vitamin supplements including fish oil as recommended by the Peadiatrician. 

Occupational Therapist who specializes in YOGA and breathing techniques to help twins with body awareness and calming strategies ( we have been only working with her for 1 month).

External regulation techniques that their Psychologist who has training  in  both play therapy  and trauma specific to children from foster care has educated us in. She comes and gives us fortnightly coaching.

As well as the Speech Pathologist who also has done some  training in Behavior therapy - as so many children with Speech problems also have behaviour problems resulting form their lack of ability to express themselves.

 so it is not like we are sitting back and not doing anything saying Oh well we have X diagnosis and so we won't bother . We have a whole team , we are working on it every waking minute. the whole team were consulted on if they thought meds were the way to go and it was decided by the team not yet. lets try these other things......

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

- she doesn't even know what they have. I know for a fact she refused to sign paperwork for OT and Speech for the twins when they came to live with us as she said there was nothing wrong with them. the reason though that she refused to give permission for angel flights for specialized treatment  for twin 1 to be able to walk was because she wanted to sue the angel flights if the plane crashed.  So glad we have guardianship  now and and can sign medical treatment permission.

I do however in my head blame her for the extreme neglect that the twins suffered- causing them to have significant global developmental delays in all domains,  the torture that they received that resulted in them having huge problems including PTSD, RAD  and the inability to acknowledge physical pain. They were removed from her care because of very valid reasons. they would not be alive if they hadn't been removed.

 

I wonder if, by the comment blaming the mother, @PeterPan    was referring not to blaming yourself, or putting the responsibility on yourself to fix the problem.  I think there is a difference between the U.S. and Australia in how we use the word “mother” in most adoption/guardianship cases. 

I don’t think she was questioning that their FAS and PTSD started with their mother’s behavior.

 

 

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24 minutes ago, Pen said:

@Melissa in Australia

One Willard type breath that I think didn’t make it into the ALpha breaths book was a “hot cocoa breath”.  A single breath, long and deep, simulating smelling (so breath in through nose not mouth) and savoring (so long and slow) the delicious smell of a cup of hot cocoa.  If they are capable of handling a cup of cocoa without danger, maybe they could start with trying it with the real thing.  

And maybe that’d give a single breath a short , but significant, benefit.  ???

 

If they can’t handle hot cocoa safely, maybe there’d be a less potentially dangerous alternative that would have smell they’d like to use.  (Fresh baked chocolate chip cookie?)   ???

 

maybe practice on such a breath could be interspersed with sipping the cocoa or eating bites of the cookie or whatever 

 

btw giggles and laughter are great, IME, very healing themselves 

We are trialing many sensory toys that involve breathing. Balloon buddies, a frog that you have to blow and its eyes float, a blowing train with a ball that floats etc. I use them while we are doing school work. as soon as twin 2 starts to make whining  noises I say blow this. It does distract him from his whining, but doesn't help him focus on his school work. ( so every few minutes) Mind you this is the boy who 4 years ago screamed for 6 hours every day. so making whining noises is a huge improvement and shows that progress is happening.

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4 minutes ago, CuriousMomof3 said:

 

I wonder if, by the comment blaming the mother, @PeterPan    was referring not to blaming yourself, or putting the responsibility on yourself to fix the problem.  I think there is a difference between the U.S. and Australia in how we use the word “mother” in most adoption/guardianship cases. 

I don’t think she was questioning that their FAS and PTSD started with their mother’s behavior.

 

 

Ah I see. I must have misunderstood. I thought she was meaning that I was blaming the mother  for taking drugs and alcohol while pregnant and destroying the children's brain, and therefore not doing anything about it 

Sorry PeterPan 😞 my misunderstanding

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1 minute ago, Melissa in Australia said:

We are trialing many sensory toys that involve breathing. Balloon buddies, a frog that you have to blow and its eyes float, a blowing train with a ball that floats etc. I use them while we are doing school work. as soon as twin 2 starts to make whining  noises I say blow this. It does distract him from his whining, but doesn't help him focus on his school work. ( so every few minutes) Mind you this is the boy who 4 years ago screamed for 6 hours every day. so making whining noises is a huge improvement and shows that progress is happening.

 

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   ?

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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

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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.

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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. 

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55 minutes ago, PeterPan said:

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. 


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.  Zones is a great program.  I love it, but it's also written on the assumption that certain kinds of thinking skills, like categorizing and if/then thinking are established, and for many 8 year olds with ID and FASD they aren't ready for it.  The kind of work with the Fitbit you describe here, and the kind of work you've talked about earlier with visual tools like lists of strategies, is the same.  They're great strategies, but they require cognitive skills that are often not in place with young kids with ID.  

That isn't to say that they won't be ready down the road.  I use many of these tools as a high school teacher of students with ID, and they have a lot of power.  But my kids are 14 - 21.  Hers are 8.  

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.  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, and provide support, like she describes with noticing that Twin 2 is starting to whine and handing him a sensory toy to blow into, and to do so so consistently that it becomes automatic, to the point that they feel a certain way and automatically reach for the toy.   

It sounds like Melissa is doing a lot of things, and those things are working. At some point more cognitive strategies might be better, but they are still very young.  

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.  

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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.  

 

 

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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. 

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