S/o child with mental Health issues and Epstein Barr

[Pen]

10 minutes ago, bethben said:

She came to me yesterday with hives starting on her body.  Under her armpits mostly.  She has had this issue before and it even got to a point that her whole body was swollen with hives.  Steroids didn't work - nothing worked until we gave her scabie medicine and it "seemed" to clear it up.  She got hives around this time last year and we gave her claritin and they went away.  No mention of needing allergy testing at the time because the scabie medicine seemed to work (even though they didn't present like scabies - she had hives that developed pretty quickly and made her face swell).  At the point she got that, she had several rounds of steroids in her little body so they may have just kicked in.  I am thinking I may need a new pediatrician.  An allergist for sure.  

 

I agree that it sounds like you need a new pediatrician!

and an allergist/ environmental health specialist who will look at a wider scope than just strict allergy

and maybe a naturopath who can look at nutrition/ supplements etc (some environmental health doctors will do that)

my own sense is that just as hives can come out on skin, there can also be an inflammation process affecting brain invisibly ...  and not necessarily to same things as causes skin hive  issues.   But she’s clearly physically  sensitive to multiple things. 

 

Eta: https://advancingmilestones.com/wp-content/uploads/2013/08/m_resources_allergy-sensitivity-intolerance.pdf

tests for ‘allergy “ usually only show the first IgE mediated true allergy type situation, but sensitivity and intolerance can be just as dangerous with neurological symptoms or even death also, and not possible to alleviate with an epi-pen.  Though it sounds like she should have epi-pen access from what you have described 

I keep mentioning the other types because you otherwise are likely to think if she did not show positive test for allergy to something that it is therefore fine — and that’s not necessarily true

[Pen]

I wonder if with the hives now you could get an appointment with allergist to look at her with the problem

if not at least take pictures IME can help 

[kbutton]

On 4/25/2019 at 11:30 PM, bethben said:

She doesn't eat many eggs right now and I haven't been baking too much lately - no muffins/cookies ect.  Dairy to me is easy because I had to avoid it so long and there is so much out there that are alternatives.  I have already started making a non-dairy kefir with coconut milk for her daily pro-biotic smoothy.  Peanuts is not too hard either.  Almond butter or cashew butter is not horrible.  She mostly uses peanut butter for apples and almond butter may be acceptable to her there.  

A lot of people prefer sunflower butter to almond or cashew butter. 

1 hour ago, Pen said:

Eta: https://advancingmilestones.com/wp-content/uploads/2013/08/m_resources_allergy-sensitivity-intolerance.pdf

tests for ‘allergy “ usually only show the first IgE mediated true allergy type situation, but sensitivity and intolerance can be just as dangerous with neurological symptoms or even death also, and not possible to alleviate with an epi-pen.  Though it sounds like she should have epi-pen access from what you have described 

I keep mentioning the other types because you otherwise are likely to think if she did not show positive test for allergy to something that it is therefore fine — and that’s not necessarily true

Actually, symptoms not relieved by an epi pen (or steroids, below) might indicate something like hereditary angioedema. An allergist can look for that. 

1 hour ago, bethben said:

She came to me yesterday with hives starting on her body.  Under her armpits mostly.  She has had this issue before and it even got to a point that her whole body was swollen with hives.  Steroids didn't work - nothing worked until we gave her scabie medicine and it "seemed" to clear it up.  She got hives around this time last year and we gave her claritin and they went away.  No mention of needing allergy testing at the time because the scabie medicine seemed to work (even though they didn't present like scabies - she had hives that developed pretty quickly and made her face swell).  At the point she got that, she had several rounds of steroids in her little body so they may have just kicked in.  I am thinking I may need a new pediatrician.  An allergist for sure.  

It sounds like the scabies meds "working" might have been coincidental as well--like maybe the whole thing had just run its course.

Steroids are also hard on your gut. I would want to know if they are working or not since they aren't great to be taking if you don't have to take them.

Your pediatrician might be fine or not fine--sometimes they are good generalists, but as people see specialists for more and more of this stuff, they don't necessarily deal with it in depth.

[PeterPan]

4 hours ago, bethben said:

We went back to the pediatrician who said she was most likely developing a bi-polar condition.

Bipolar is linked to the methyl levels, and yes there's plenty of documentation on ADHD stimulant meds bringing out bipolar. The doc isn't jiving you there. The question then is whether you want meds or biomedical based on genetic testing. I'm not expressing an opinion on that, saying that's just what you're looking at. If you want it under control and want the raging to STOP, you either do biomedical based on genetics or meds. 

So I'll be straight. Are you from a religious community that is telling you not to listen to the DSM, not to pursue mental health treatment, etc.? That's my background, so if you're dealing with that I get it. But when you go down that road with the nouthetic counseling, the whole everything is sin, this would go away if you would read enough scripture and pray hard enough and want to hard enough, well one it's MAN MADE SANCTIFICATION which is really odd when you think about it. They're like you're not feeling right and you're unstable because you WON'T DO ENOUGH. How ironic. Two, it's head in the sand about the actual effects of sin over time, genetic mutations.

We can run genetics. We can SEE what genes are broken and trace them EXACTLY to the behaviors of the raging. There is no confusion on this. It is no longer a mystery. All the mess we were told in the 80s about how we shouldn't "believe" in mental illness, blah blah. Whatever. Idiots. I've run genetics, I've seen my kid's results, I know my theology, and my bible tells me genetic mutations are happening as a result of sin and the Fall. There is no mystery about this.

So whatever, I don't know if that's what you're dealing with. It's my background and where everyone I know is coming from, including my christian university, all the churches I've ever attended, etc. And it is the most hurtful thing to tell a person who wants to do better, whose body is making that very hard, that if they just wanted to be a nicer, calmer person they would be. Let's run genetics, get our heads out of the sand, and do something about it. I like biomedical based on genetics, but sure I'd use meds in a heartbeat if the were the right call. It's a big hurdle and it's isolating and this totally unexplored territory for some people. We don't want to let anyone hold us back on helping our kids.

5 hours ago, bethben said:

The only good help we've gotten is from a nurse practitioner who thinks the medical community is not to be trusted.  

See if she will sign up with GeneSight and run genetics. They have genetic testing for psychotropics and the ADHD meds too, so you'll be able to see why, which specific genes were causing the negative reactions. She sounds like she would benefit from some sort of mood stabilizer, and it would be nice to have genetics to help you make that choice.

My personal advice would be NOT to look for one single answer, like those food allergies. They needed to be done, because her significant consumption of dairy was the flag for being allergic. But she's also got some more layers, with a probable COMT defect, maybe more. Some of this stuff is easily treatable!!!! My ds began stabilizing with vitamin D, which we realized he needed because of his VDR gene defect. Same for the 5HTP, amazing amazing difference. If you don't want prescription meds, that's something to look into. 

My ds has given me multiple concussions and he's pretty challenging. We now have him completely calm on a mixture of vitamin D, 5HTP, calcium/magnesium, etc. K2 helps the D absorb and makes him easier to touch. And we were at meltdown point in our house too. There IS NO cognitive strategy that's going to get through till you get the body calmed down. The only question is how and who will help you get there. The GeneSight website has a provider search engine, so you could look for help. There will be p-docs, nurse practitioners, all kinds of people

5 hours ago, bethben said:

I don’t know if it’s normal for a kid to threaten rages if she doesn’t get her way.  

It's really interesting, because it reflects a level of social thinking. Have you looked at the Social Communication profiles? https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile  You might see where she falls and whether that explains it.

[PeterPan]

1 hour ago, bethben said:

She came to me yesterday with hives starting on her body.

Is it possible in changing foods she has added something she's reacting too? 

Is she eating fruit daily? Preferably organic? If someone is having food reactions, fruits and veges to rebuild the gut and organic can help stop those reactions.

She sounds very stressed. Does she do anything with you that is not stressful? With our ds, the FIRST THING the behaviorist wanted, like the absolute total highest priority, was getting his stress down.

Edited May 1, 2019 by PeterPan

[bethben]

We’re not opposed to getting counseling/psychiatric help or using drugs to stabilize her moods.  No religious conviction about it and a healthy perspective that sometimes your brain chemicals may be off.  We just really need/wanted a starting point.  If it’s a mental disorder (anxiety/depression/bipolar) that’s one road.  If it’s food/environmental related that’s a different road.  If it’s trauma/RAD—totally different road. All we been given so far is being told that the medications she was on weren’t causing her rage and increased anger/aggression when they clearly were.  I have been going these other paths of getting her tested by a psychologist on my own.  I have a child who has had trouble with anger and has been lagging in increasing in maturity for years and have wondered what we are doing wrong to the point that I have questioned my ability to be a good mom to any of my children.  She has pushed us over the edge and my DH and I are starting to be concerned about early death from stress about each other.  I know other parents of kids who are difficult but none of them are at the point of questioning their long term health like DH and I have been.  We need this to stop and I’m grasping at whatever I can to figure this out properly.

[Pen]

1 hour ago, kbutton said:

A lot of people prefer sunflower butter to almond or cashew butter. 

Actually, symptoms not relieved by an epi pen (or steroids, below) might indicate something like hereditary angioedema. An allergist can look for that. 

 

I was thinking Eli-pen access because of positive allergy tests to peanuts, dairy and ? Eggs?

 

EBV can also cause hives.

but yearly return suggests something at this time of year triggers them

 

 

 

 

1 hour ago, kbutton said:

Steroids are also hard on your gut. I would want to know if they are working or not since they aren't great to be taking if you don't have to take them.

 

Even if not previously a problem, gut biome was probably disturbed by the steroids

 

 

[Pen]

6 minutes ago, bethben said:

We’re not opposed to getting counseling/psychiatric help or using drugs to stabilize her moods.  No religious conviction about it and a healthy perspective that sometimes your brain chemicals may be off.  We just really need/wanted a starting point.  If it’s a mental disorder (anxiety/depression/bipolar) that’s one road.  If it’s food/environmental related that’s a different road.  If it’s trauma/RAD—totally different road. All we been given so far is being told that the medications she was on weren’t causing her rage and increased anger/aggression when they clearly were.  I have been going these other paths of getting her tested by a psychologist on my own.  I have a child who has had trouble with anger and has been lagging in increasing in maturity for years and have wondered what we are doing wrong to the point that I have questioned my ability to be a good mom to any of my children.  She has pushed us over the edge and my DH and I are starting to be concerned about early death from stress about each other.  I know other parents of kids who are difficult but none of them are at the point of questioning their long term health like DH and I have been.  We need this to stop and I’m grasping at whatever I can to figure this out properly.

 

It is probably multiple roads!

if no others you now know foods are involved 

(and very probably more than showed up on the testing) 

and children adopted past newborn nearly always have had at least emotional trauma IME 

 

And adhd and perhaps bipolar have been raised

 

i’m forgetting, but was this a child with cleft palate where there’d also have been physical trauma at least related to that?  There have been more than one adopted child with issues threads and I get confused who is who.

 

When she’s not in a meltdown, I would try to get her to tell you what she thinks is wrong.  If she has any idea about what might be giving her hives.  If she has ideas about how to manage things that are currently traumatic like the morning routine 

 

therapy for you and dh of some sort to reduce stress seems also needed

a person I know with autistic child used to do her own meditation and stress supplements before dealing with spectrum meltdowns

 

is she in a good school placement?  Maybe someplace without uniforms and detentions as a primary way of getting desired behavior—and with more SPED type help might be available?

 

[Pen]

 

A few more book suggestions:

 

Raising Human Beings: Creating a Collaborative Partnership with Your Child https://www.amazon.com/dp/1476723761/ref=cm_sw_r_cp_api_i_yaFYCbVDHZT02

 

Delivered from Distraction: Getting the Most out of Life with Attention Deficit Disorder https://www.amazon.com/dp/0345442318/ref=cm_sw_r_cp_api_i_KcFYCb618C850

Connect: 12 Vital Ties that Open your Heart, Lengthen your Life, and Deepen your Soul https://www.amazon.com/dp/B00B6OVOEK/ref=cm_sw_r_cp_api_i_8bFYCbNWGSQC0

and in the bright and quirky summit talks, I was inspired by Laura Markham— possibly something by her — book or videos or you tube or her website could help

[Pen]

 

 

7 minutes ago, Pen said:

is she in a good school placement?  Maybe someplace without uniforms and detentions as a primary way of getting desired behavior—and with more SPED type help might be available?

 

 

 

I know a family with a dd who seemed to have something like ODD — who started to thrive emotionally in a much more ordinary, somewhat laid-back public school environment 

[bethben]

44 minutes ago, Pen said:

 

 

 

 

I know a family with a dd who seemed to have something like ODD — who started to thrive emotionally in a much more ordinary, somewhat laid-back public school environment 

She actually does better with more structure.  It irritates her if people don’t follow the rules or listen to the teacher (yes ironic, but there it is).  It shows she is different at home than at school.  Rules are meant to be followed if someone else gives them.  If mom and dad give them, then rules are meant to be ignored or argued about (unless she’s in a good mood and then they do get followed).  

Yes, her stress level does need to come down at home.  It’s hard when she’s pretty much made herself an enemy to her brothers with DH and I burnt out by her emotional ups and downs and arguing about everything.  Yesterday, she kept arguing with me about the availability of a parking space and why wouldn’t I take that one instead of backing up into the one I had decided upon.  I kept telling her to look for the very small car parked in her chosen spot.  She refused to believe me until she saw it.  It’s that type of thing that’s constant.  If I ignore her arguing, she tends to escalate it.  If I try to stop her from arguing (ie. calmly telling her to wait on talking to me)  she escalates.  Sigh...

[maize]

If her behavior is very mood dependent stabilizing her moods should be a top priority.

Easier said than done, I know, but at least it's a direction to be looking in.

[Innisfree]

7 hours ago, bethben said:

  It's just hard when you try to get help and the help you get makes things worse or at the minimum not better.

This is so familiar to me. Yes. It's taken me years to get (mostly) past the anger at practitioners who gave us advice which made things so much harder than they needed to be. The trauma is real. You go to the people who are supposed to be professionals, are supposed to have  answers, and their advice makes things so much worse when you're already struggling so hard. I'm sorry you've experienced that.

In our case, I can recognize now that those professionals had no training in how autism presents in high-functioning girls. They did their best.

I agree that The Explosive Child might be helpful. Also check out Your Defiant Child. It has a very useful plan for getting out of the cycle of anger-> bad behavior -> punishment -> anger-> bad behavior, and cultivating a more positive relationship.

https://www.amazon.com/Your-Defiant-Child-Second-Behavior/dp/1462510078/ref=mp_s_a_1_1?keywords=your+defiant+child+barkley&qid=1556741909&s=gateway&sr=8-1

I hope some of this helps.

[Storygirl]

I am on my way out the door and don't have time to respond in detail now, but I wanted to say that I'm sorry the NP isn't seeming to be helpful. I agree that the three that we have been to have all had us have a private parent conversation as part of the intake. A good psych would understand that a parent has things to unload that it's not helpful for the child to hear.

I also agree that the rages are what tip this over from a description of ADHD to something extra. RAD, autism, I don't know, of course.

I also agree that you need a new pediatrician and/or a pediatric psychiatrist to address the ADHD and med issues. There are so many different meds to try. DS15, for example, was angry and aggressive in attitude on Adderall, but he is on another med that really works for him. If the doctor only tried one and then said the med couldn't be having those side effects......that doctor is not good enough.

I also agree with what Maize said, as hard as it is for me to hear it, as a parent who is also exhausted and spent and hurt. Your daughter doesn't mean to be this way. And even if she thinks in her head that she does mean it and is being deliberate -- because I KNOW how it is when the child is acting out deliberately -- it is because there is dysfunction. You have done a lot to try to figure it out, and I'm sorry you don't have explanations yet. I know it's hard to keep working to figure it out, and so utterly discouraging that it is damaging to you personally. I'm so, so, so sorry about that, and I hope that your diligence will pay off with some better answers, even though you haven't found them yet.

[moonflower]

12 minutes ago, maize said:

If her behavior is very mood dependent stabilizing her moods should be a top priority.

Easier said than done, I know, but at least it's a direction to be looking in.

 

I just wanted to say that this small post was an eye-opener for me. The concept of behavior that is not mood dependent, wow!

[Pen]

44 minutes ago, bethben said:

She actually does better with more structure.  It irritates her if people don’t follow the rules or listen to the teacher (yes ironic, but there it is).

 

That isnt a huge surprise.  But I’d still look at whether it is overall a good placement for her overall. Beginning with the daily stress to get dressed in uniform.  Though maybe she cans help figure out how to cope with that herself 

 

somewhere u may have also mentioned that she seems immature for her age.  That’s typical for adopted children.  Also ADHD kids are often slow on emotional maturity.  U may have both together 

44 minutes ago, bethben said:

 It shows she is different at home than at school.  Rules are meant to be followed if someone else gives them.  If mom and dad give them, then rules are meant to be ignored or argued about (unless she’s in a good mood and then they do get followed).  

Yes, her stress level does need to come down at home.  It’s hard when she’s pretty much made herself an enemy to her brothers with DH and I burnt out by her emotional ups and downs and arguing about everything.  

 

44 minutes ago, bethben said:

Yesterday, she kept arguing with me about the availability of a parking space and why wouldn’t I take that one instead of backing up into the one I had decided upon.  I kept telling her to look for the very small car parked in her chosen spot.  She refused to believe me until she saw it.  It’s that type of thing that’s constant.  If I ignore her arguing, she tends to escalate it.  If I try to stop her from arguing (ie. calmly telling her to wait on talking to me)  she escalates.  Sigh...

 

This seems very familiar to me — I wonder what would happen if you very calmly acknowledged what she has said, neither argue nor ignore.  

Also, could u give her a car job? I had to give one (much younger) a steering paper plate.  Another has had job of watching for pedestrians and bikes.  

[Jean in Newcastle]

1 hour ago, bethben said:

She actually does better with more structure.  It irritates her if people don’t follow the rules or listen to the teacher (yes ironic, but there it is).  It shows she is different at home than at school.  Rules are meant to be followed if someone else gives them.  If mom and dad give them, then rules are meant to be ignored or argued about (unless she’s in a good mood and then they do get followed).  

Yes, her stress level does need to come down at home.  It’s hard when she’s pretty much made herself an enemy to her brothers with DH and I burnt out by her emotional ups and downs and arguing about everything.  Yesterday, she kept arguing with me about the availability of a parking space and why wouldn’t I take that one instead of backing up into the one I had decided upon.  I kept telling her to look for the very small car parked in her chosen spot.  She refused to believe me until she saw it.  It’s that type of thing that’s constant.  If I ignore her arguing, she tends to escalate it.  If I try to stop her from arguing (ie. calmly telling her to wait on talking to me)  she escalates.  Sigh...

This description of arguing about the parking space is called "rigidity of thinking" and is one hallmark of ASD.   (Don't know if it is exclusive to that but I see it a lot in my Aspie.)

ETA - when my Aspie is (literally ) arguing with me over whether the sky is blue, it is not a matter of stubbornness or wanting his way.  It's that his brain cannot give up an idea - at least very easily.  I do not argue back.  I don't give in either.  But arguing back when his brain can't move on, is counterproductive and does neither of us any good. 

Edited May 1, 2019 by Jean in Newcastle

[Innisfree]

39 minutes ago, Jean in Newcastle said:

This description of arguing about the parking space is called "rigidity of thinking" and is one hallmark of ASD.   (Don't know if it is exclusive to that but I see it a lot in my Aspie.)

ETA - when my Aspie is (literally ) arguing with me over whether the sky is blue, it is not a matter of stubbornness or wanting his way.  It's that his brain cannot give up an idea - at least very easily.  I do not argue back.  I don't give in either.  But arguing back when his brain can't move on, is counterproductive and does neither of us any good. 

I was thinking the same thing. The bit about following rules sounds like ASD, as well, as does the need for structure.

[Innisfree]

1 hour ago, Innisfree said:

Also check out Your Defiant Child. It has a very useful plan for getting out of the cycle of anger-> bad behavior -> punishment -> anger-> bad behavior, and cultivating a more positive relationship.

https://www.amazon.com/Your-Defiant-Child-Second-Behavior/dp/1462510078/ref=mp_s_a_1_1?keywords=your+defiant+child+barkley&qid=1556741909&s=gateway&sr=8-1

Quoting myself to add that I'm specifically talking about the first stages in his plan, where you stop punishments (for the time being) and focus on relationship and spending time doing things your child enjoys with her. The later stages might or might not be useful. We did do the rewards, and kept it up a good while. But the game-changer was at the start, where the whole relationship shifted. 

[Pen]

5 hours ago, Jean in Newcastle said:

This description of arguing about the parking space is called "rigidity of thinking" and is one hallmark of ASD.   (Don't know if it is exclusive to that but I see it a lot in my Aspie.)

ETA - when my Aspie is (literally ) arguing with me over whether the sky is blue, it is not a matter of stubbornness or wanting his way.  It's that his brain cannot give up an idea - at least very easily.  I do not argue back.  I don't give in either.  But arguing back when his brain can't move on, is counterproductive and does neither of us any good. 

 

  This behavior also fits trauma survival children, I’ve had experience with as well as some children with other things going on.   Including food allergy reactions.  AAnxiety disorders...

If it is ASD, I hope the recent evaluation, imperfect as it is, will raise that.  

 

Edited May 2, 2019 by Pen

[BeachGal]

If you suspect neglect might be playing a part, Bruce Perry’s YouTube channel or books could be helpful. He’s a psychiatrist who specializes in child trauma/neglect, how it affects children and how they can be helped.

[PeterPan]

9 hours ago, bethben said:

If it’s a mental disorder (anxiety/depression/bipolar) that’s one road.  If it’s food/environmental related that’s a different road.  If it’s trauma/RAD—totally different road.

More likely it's all 3. I would think getting the body calmed down from the food allergies (which you're doing) and getting the mental health issues treated (which could be next on the list) would allow her to take advantage of the counseling and strategies for the RAD. That's what the professionals told me for our ds, to get his body calmed down and his mind stable so he could actually use and incorporate  the opportunities he was being given with counseling, ABA, etc.

[PeterPan]

7 hours ago, maize said:

If her behavior is very mood dependent stabilizing her moods should be a top priority.

Agreed. I don't see how you make any headway with social thinking, rigidity, possible autism, possible RAD, ANYTHING without the moods stabilized and the body calmed down. And if your ped hasn't been talking to you straight (op), what you want is either a p-doc or psychiatric nurse practitioner. Time to move on from your ped and get some actual help. With the level of challenge you've got, people see a pdoc. That's a psychiatrist.

If you want a psychiatrist who runs genetics, do that. If you want to do it without, that's fine too. But that's what you're looking for. 

https://genesight.com/find-a-provider/

[PeterPan]

9 hours ago, bethben said:

All we been given so far is being told that the medications she was on weren’t causing her rage and increased anger/aggression when they clearly were.

That's why you want the genetic testing, because they can show why that was happening and choose meds more carefully. At the link I just gave for Genesight, you can find a pdoc who will do the Genesight testing.

9 hours ago, bethben said:

We need this to stop and I’m grasping at whatever I can to figure this out properly.

Then you probably need to schedule with a pdoc. The psychologist can't give you meds and the ped isn't prepared to sort this level of problem out. The person you go to is a pdoc. 

Fwiw, and this is just my opinion, I start with safety. I have ZERO QUALMS medicating an individual for safety. After things are calm and safe, then tweak. But if you've got this reverse order in your mind, like wanting counseling before you decide to pull the trigger on meds, well then I go back to the SAFETY issue. 

Have you seen this movie? You can do a free trial with HBO and watch it. It's excellent and might put your issues in perspective. They aren't talking about a particular label, only following families dealing with what you are. https://www.amazon.com/Dangerous-Son-Liz-Garbus/dp/B07CVN4Z4D/ref=pd_ys_iyr11

[Pen]

Out of curiosity, how does this child get her needs or desires for autonomy met other than tantrums? Have other methods been worked out? 

[maize]

Thinking about you this morning BethBen, sending hugs and prayers for a good morning.

I'm wondering, have you been able to find any calming devices for when your dd is in rage/meltdown mode? For one of mine, when she was raging we could often get her down off the screaming-hitting-kicking cliff by sitting down in her vicinity and calmly starting to read a story book. As she got older this transitioned to encouraging her to listen to audio books when she was emotionally dysregulated. This kid had an ODD diagnosis at the time, though my instinct as a parent was that the underlying issue was anxiety. Another child with anxiety and ASD traits responded best to turning on a favorite video; I'd been pretty determined to limit screens in the past but it was the only thing that would grab his brain's attention enough to distract it from Full Alert mode.

If you are used to a consequences style of parenting this may seem counterintuitive--like rewarding the child for poor behavior--but the simple truth is that a brain in Full Alert mode is not going to think through consequences; the goal is to help the child get out of the emotional loop they are stuck in. The first key to that is distraction--grabbing the brain's attention with something it wants and likes; after that the loop can be broken and the child can start to calm down.

[moonflower]

Maize, you are a fount of wisdom.  I don't have kids with ASD or ODD, but one with ADD tendencies which I have myself, and a couple with high anxiety which I definitely have myself and always have had.

the idea of distracting the brain in meltdown/rage mode with something it wants and likes, so that the emotional loop can be broken - I can teach my older kids to do that for themselves.  I've struggled for years with how to teach some of my more rage-prone/meltdown-prone kids how to self-soothe or break the cycle.  I've just realized that I've been giving them MY self-soothers, the things my brain likes, but that doesn't work for them because their brain likes different things.  I am going to use this right away.

 

[Pen]

1 hour ago, maize said:

Thinking about you this morning BethBen, sending hugs and prayers for a good morning.

I'm wondering, have you been able to find any calming devices for when your dd is in rage/meltdown mode? For one of mine, when she was raging we could often get her down off the screaming-hitting-kicking cliff by sitting down in her vicinity and calmly starting to read a story book. As she got older this transitioned to encouraging her to listen to audio books when she was emotionally dysregulated. This kid had an ODD diagnosis at the time, though my instinct as a parent was that the underlying issue was anxiety. Another child with anxiety and ASD traits responded best to turning on a favorite video; I'd been pretty determined to limit screens in the past but it was the only thing that would grab his brain's attention enough to distract it from Full Alert mode.

If you are used to a consequences style of parenting this may seem counterintuitive--like rewarding the child for poor behavior--but the simple truth is that a brain in Full Alert mode is not going to think through consequences; the goal is to help the child get out of the emotional loop they are stuck in. The first key to that is distraction--grabbing the brain's attention with something it wants and likes; after that the loop can be broken and the child can start to calm down.

 

ITA!  

This is huge.    

 

I’m also concerned that the parent, bethben, is also in an overstressed and dysregulated trauma state and that attempts I make to give potentially helpful ideas or info add to that rather than helping.  

probably everything related to the child needing to be able to Calm down, also relates to the parents ... and maybe the siblings too.  

 

Getting locked into an escalation of argument can be limbic system and trauma / anxiety related. 

 

With regard to this child calming,  one thing that had caught my attention in other thread was that an item that might possibly have been part of this child’s self calming repertoire, namely the stuffed animal iirc, was not allowed to be played with because it interferes with morning routine of getting ready and out the door on time.  

I’m suspecting that there’s a clash between what parent needs / wants to achieve a calm limbic system and what the child needs / wants to achieve calm.  And that if this could be fixed just for their morning routine it would be a huge help

 

My ds used to use stories a lot as you described above, that I read to him, or later that he listened to as audiobooks.  Physical stuff like gardening or playing with dog has also always been a major help.  Music often. I listened to audiobook during my last dental visit and during a biopsy to help calm my limbic system.  

My ds now listens to a lot of ASMR through cellphone earbuds which is both distracting and calming, and in addition may be giving a sound form of EMDR as sound goes back and forth between ears.  Similarly, I have Brain Wave binaural sounds which I can play alone or under pink noise or along with  an audiobook.  

 

Another important thing is for adults to recognize self calming behavior and not to interrupt it (though with age it may need to be worked on to shorten it down and perhaps to be more socially acceptable).   Self calming can easily look like being bad (for example a child who when stressed turns around and rocks and who thus seems to be willfully ignoring the parent in bad way— rather than recognition that the child is trying to deal with overload and to self calm), but it is a positive step toward emotional regulation and maturity.  Interrupting an attempt at self calming can easily lead into meltdown,  tantrums, rages.

 

 

 

[kbutton]

17 hours ago, Jean in Newcastle said:

This description of arguing about the parking space is called "rigidity of thinking" and is one hallmark of ASD.   (Don't know if it is exclusive to that but I see it a lot in my Aspie.)

ETA - when my Aspie is (literally ) arguing with me over whether the sky is blue, it is not a matter of stubbornness or wanting his way.  It's that his brain cannot give up an idea - at least very easily.  I do not argue back.  I don't give in either.  But arguing back when his brain can't move on, is counterproductive and does neither of us any good. 

Agreed.

16 hours ago, Innisfree said:

I was thinking the same thing. The bit about following rules sounds like ASD, as well, as does the need for structure.

Agreed.

12 hours ago, Pen said:

 This behavior also fits trauma survival children, I’ve had experience with as well as some children with other things going on.   Including food allergy reactions.  AAnxiety disorders...

If it is ASD, I hope the recent evaluation, imperfect as it is, will raise that.  

I think there is a big overlap in how you deal with trauma and with ASD, though the mental processes can be different. Looking at strategies that help both might be a good place to start while sorting it out. I think the calming and relationship building stuff can be good for both with the caveat that differing facets of ASD might make relationship stuff harder, but there are angles to that, like building trust even if a different kind of closeness might be hard to develop. Catching instances where her intuition is right vs. demonstrating it's wrong is a way to build trust--both of you might find ways in which she's contributing good thoughts/concerns or demonstrating what she's concerned about.

If you are able, for example, to figure out why she was stuck on the parking spot thing, there might be something in there to validate. If it were my kid (not so much an issue now but would've been a few years ago), he'd probably be looking for the optimal place to park and would've been sure that this time, the spot might be a real one vs. one with a car in it. (A total aside: for all you know, she could have poor visual spatial skills and not be processing the visual info the way you are.) But anyway, my process would be to verbalize out loud something like, "How disappointing! It looked like it was a great spot, and then it wasn't. That's frustrating, but we'll just have to watch more closely next time. Do you know what spots trip me up? I get all excited about an open spot, and then I find out it's really a cart corral. I learned that I have to look for the sign at the top of the cart corral over the top of the cars instead of looking for where bumpers line up/roofs line up [and if it's not too much information: ...because not all cars are the same size.]." 

This isn't going to help every kid, but this kind of exposing problem-solving and self-soothing strategies is really powerful for some. For others, it might be more like jumping in the deep end of the lake. I think of it as playing a card game that is new to everyone with an open hand--we all talk about what we could do and what's the best option so that everyone learns. Except with kiddos with challenges, you kind of do this all the time with life-skills. If language is an issue, it might not help. If functioning in specific areas is too low, it might not help. You might have to tone down the frustration before it's going to work. You might zip your lips on the parking thing this time, but then start at a totally different point observing cars and how to easily the small ones disappear between big ones and go no further for a long time. But often, my son just needed words and a hierarchy, words, and a process for deciding what's a big deal, a medium deal, a little deal, fixable, not fixable, annoying vs. horrible, etc. He had to have more context to learn what people usually learn pretty easily. The same process makes things less frustrating and makes him more reliable at drawing conclusions.

Also, "magical thinking" is a thing with these kids. Some due to significant deficits with reasoning and some with maybe a broken thermometer for what's realistic. I know that with CBT, you're often wanting to expose and fix magical thinking, but with these kids, I think that can be too much at first (sometimes at all). But, recognizing it as magical thinking on the adult-side can help. It's not just that it's illogical, it's illogical in a specific pattern, and the skill to be learned is for the kid to understand what's NOT magical thinking and slowly warm up to the idea that they are mistaken. I feel like autism has a special kind of magic thinking--the, "If it happened once, it's always supposed to be that way" rule, lol! Or, the corollary, "There are no exceptions to anything, ever" rule. For example, "If the parking spot looks empty, it must be empty." You kind of have to drip, drip, drip the idea that it might not be the way they think it is WHILE ALSO helping them understand that their conclusion is a form of intuition, validating it, but helping calibrate it to something more reliable. They need to be able to draw conclusions too, but they need help to draw good ones. 

Again, this can be too much for some kids and just right for others. For the adult, just realizing these gradients of thought exist can be really eye-opening (and exhausting and terrifying, lol!).

[Pen]

 

1 hour ago, moonflower said:

  I've just realized that I've been giving them MY self-soothers, the things my brain likes, but that doesn't work for them because their brain likes different things.  I am going to use this right away.

 

 

That’s really important!  

What soothes parent could even be a stress trigger for child and vice versa! 

[kbutton]

@bethben None of what I suggested is particularly intuitive. My learning to do this at least some of the time (and not always well) was out of sheer desperation when I had a very precocious toddler who didn't know he wasn't an adult (another ASD trait--no understanding of "authority") biting the heck out of me when I would violate his "rules." He was a master at ABA as applied toward getting the parent to comply with demands, lol! (Actually more like making sure the parent knew that is what he expected.) We were a hot mess. 

At first, I felt like a total idiot explaining things to this child that technically shouldn't even be things he "could" be thinking about, but the proof was in his responses--he calmed and complied when he got what he needed (and need is defined pretty broadly--both his interest in something and his deficit in not being able to support that inclination with accurate conclusions were anomalies compared to neurotypical kids). He did not reciprocate with words, generally. We had to read the results in the behavior.

[Pen]

9 minutes ago, kbutton said:

13 hours ago, Pen said:

 

I think there is a big overlap in how you deal with trauma and with ASD, though the mental processes can be different. Looking at strategies that help both might be a good place to start while sorting it out. I think the calming and relationship building stuff can be good for both with the caveat that differing facets of ASD might make relationship stuff harder, but there are angles to that, like building trust even if a different kind of closeness might be hard to develop. Catching instances where her intuition is right vs. demonstrating it's wrong is a way to build trust--both of you might find ways in which she's contributing good thoughts/concerns or demonstrating what she's concerned about.

 

I agree.  Using knowledge about how to deal with both would be a good idea.

The child could even have both.  But statistically she has probably close to 100% chance of trauma — like  complex ptsd issues.  

Probably both child and parents, especially bethben, have some trauma issues and are triggering yet more in each other. 

Fixing that for both, acknowledging it for both, could itself be relationship building and healing.

you all who are seeing ASD here could be right, but I am seeing it from afar as a multiple complex -ptsd trauma suffering family

and one where a lot of healing for all is probably very possible

[maize]

Thinking a bit more about my relationship with Dh--I think there are actually some attachment disorder aspects to the difficulties we have had. Dh has multiple physical disabilities, as a kid he was bullied because he wore crazy thick glasses, had hearing aids, etc. He came from a very supportive home, but his social experience outside of home was definitely traumatizing and that on top of high natural levels of anxiety that developed easily into depression was not a good combination.

Even as newlyweds, his natural response to feeling stressed was to turn away from me and to push me away with harshness and anger if I tried to offer comfort or help. It took sixteen years of marriage for that to start turning around, for him to start seeing me as on his side and not an enemy when his stress was high. My responses to him during that time sometimes made things worse, I was very much learning as I went. Deciding to do everything I could to always be a safe person for him (even when he wasn't being an emotionally safe person for me) made a big difference. These days he does mostly turn towards me and not away from me when he is stressed; it has been a very significant transformation.

Edited May 2, 2019 by maize

[kbutton]

5 minutes ago, Pen said:

I agree.  Using knowledge about how to deal with both would be a good idea.

The child could even have both.  But statistically she has probably close to 100% chance of trauma — like  complex ptsd issues.  

Probably both child and parents, especially bethben, have some trauma issues and are triggering yet more in each other. 

Fixing that for both, acknowledging it for both, could itself be relationship building and healing.

you all who are seeing ASD here could be right, but I am seeing it from afar as a multiple complex -ptsd trauma suffering family

and one where a lot of healing for all is probably very possible

I see bits of both, and I know families where there is one or the other and some families with both, but in none of those cases did it become clear quickly, which is why I would look for solutions that include at least some ASD strategies or take into account the social thinking deficits of ASD. It's not likely to "hurt" anything for the trauma, but ignoring potential ASD traits could delay help for the trauma stuff because life would continue to be "too hard" without those ASD strategies. (Though things like therapeutic listening or EMDR might not be areas that would be held back by a lack of clarity diagnostically).

I also don't want the potential ASD traits to get ignored--if this is a both situation, it's far easier for the ASD to be missed, particularly when we're talking about a girl that seems to be pretty bright. If one is open to the possibility of ASD, it's easier to start reading and seeing more traits and have an "aha" moment, or to ask those questions. Until you have a kid or a close friend has a kid with an ASD profile that is kind of borderline, it's easy to miss and that can delay effective solutions.

So, not trying to argue...just highlighting some details that could be a big deal in some circumstances.

Either way, ASD, trauma, or both will require a fair amount of trying things out, tweaking them, etc. 

I am trying to give bethben more filters/words for some of the specific behaviors because that's exactly what I needed. Until I could actually justify saying, "that's a potential ASD trait," I was left with, "this is a conduct disorder." While many of us can see ways to give with conduct issues more tools, most of us got there via the firestorm of learning about special needs. I would never expect a parent without that background to be able to make that leap unless they were coming from a trauma/adoption/foster care background with some pretty good experience under their belt. I still think the "give them more tools" mentality is a big leap for most parents. Outside of adoption/SN, I am far more likely to encounter harsher parents due to behavior issues or more lax parents that turn a blind eye--those are more typical responses to difficult kids that I see IRL. 

[kbutton]

I guess I'm saying that I personally needed a "why" to implement some of the suggestions that people are offering. That why, in our case, was ASD. There is no way that without considering that possibility as valid would I have felt like I could choose to parent so radically different, aside from some of the verbalizing strategies I tried. Early on, I could make myself do that because I thought the problem was that my son was trying to do things that were too hard (the gifted part). At some point, that ran out of gas--other gifted kids didn't need that, and more weird stuff started happening. But he wasn't like what I knew about kids with ASD (lots of myths).

I suspect bethben needs a "why" to feel free to act on some of this stuff. Just a hunch. So, where I see ASD, I am trying to point that out. I don't have the right kind of direct experience to make trauma suggestions. 

I think your suggestions, and others, have been great. But I'm stuck on the why and feel a need to keep matching details to the why for bethben. 

[Storygirl]

When I woke up this morning, Beth, you and this thread were the first thing on my mind, other than getting the kids off to school.I was/am feeling such sympathy toward you, and I wish I could just relieve some of your burden in real life. I know that I can't do that, but I can offer my support.

***deleted for privacy****

You are not alone.

I know that doesn't solve your day to day problems. But I hope it helps for you to know that there are others who can understand.

*** Beth, I assume that you had a chance to read this before I deleted. If not, you can PM me.

Edited May 3, 2019 by Storygirl

[Storygirl]

About the autism question. Really, we can't know, those of us who are peeking into your life online. BUT I have thought that to be a possibility, ever since the year that your daughter was in the school where she tried to enforce the rules all of the times. That was a really long thread, I think.

I hope that your psych ends up giving you some helpful information after all. I don't know if this will be discouraging or helpful to hear, but many of us who hang out on the LC board have had our complex kids evaluated more than once, by multiple people, over time, because the first evaluation doesn't provide all of the answers. That's not great, obviously. It would be better for everyone have a one-stop evaluation experience. But it's not reality for a lot of people.

So if you don't get enough answers now, you can act on what you know (new allergies, that the ADHD med made things worse) to address those issues. Find a pediatric psychiatrist and work on figuring out the meds. It's a first step.

Then work on unraveling the next part.

I'm sorry to say that with kiddos like we have, getting the diagnosis is not actually the solution. It gives information and hopefully access to more help, or a new vision for a path forward, or a new prescription or diet that might help. But the diagnosis is a step toward, not a solution.

Then you have to take the next step. And then the next one. And then the next one. It's a long haul.

And that's why I appreciate the advice that has been listed on this thread that is directed toward you, as the parent. Because in order for change to happen with your daughter, the change has to be implemented by you and your husband as the parents And this is so, so hard, when you are as hurt as you are. I feel so overwhelmed when I feel like I am drowning, and the answer is that I need to do more or do something different, because I don't feel I have the personal resources to tackle anything else.
 

[Storygirl]

Because I am still climbing out of the hole of my burn out, I don't have as much stamina and internal reserves as I need. I just plain don't have it within me. One of the things, as a Christian, is that I know I need to turn more to God in these times, because He promises to help us carry our burdens. I also tend to feel lots of guilt for not praying enough, not reading the Bible enough, not leaning on God enough.

My life verse is Proverbs 3:5-6 "Trust in the Lord with all of your heart and lean not on your own understanding. In all of your ways acknowledge Him, and He will make your paths straight." And it's not my life verse because I am good at doing that. It's my life verse, because I am terrible at it, and I try to figure everything out on my own, and I need to remind myself that God expects that I will need Him, and that He is constantly there for me, even when I am not leaning on Him.

God has a plan for you and your daughter and has a reason that He put you together. This is TRUE, whether it feels true to you, or not.

Right now, I feel like I would have been a healthier person and would not feel so broken if I had not adopted so many children. But I shore up those feelings with the truth, which is that God formed my family according to His will, even though I am the one who chose to adopt and the one who choose these particular children.  And His will is good in the end, even when it means walking a very hard road.

I hope you have some blessings shower on you on this day.

[PeterPan]

11 hours ago, Pen said:

Out of curiosity, how does this child get her needs or desires for autonomy met other than tantrums?

Or in the autism community we call it power, and we'll talk about giving the dc power without ceding our own. The need to be in control is a stress response, yes. So increasing the dc's power and choices and ability to exercise power (without letting it flap us) is a really strong strategy for decreasing stress. And when you decrease stress, you lower stress reactions like that constantly flipping to the raging.

Now we had to do the bodywork too. But yes improving his sense of control and power is a strategy. So like when the behaviorist comes in, she is measuring how much he's running the show and how much he is. They'll flip it over to 100% kid-run, doing everything the kid wants, with ZERO PUSHBACK. And they'll slowly, over a period of months, increase the amount they pushback and try to have some power in the relationship. 

But yeah, you can literally say to things fine. Or you can decide it's not a choice and give them other choices. You can help them make a list ahead of what the choices are for the situation, so they have lots of power and you're still cool with the options.

I think if the dc is going to school that really increases the stress. Like this morning stuff isn't a big deal if you have all day. But when yu're like no, we have to go NOW, suddenly it's a huge problems. Btdt a little too muh, sigh. That takes a lot of working around, yes. Very stressful. It pushed things over in our house to the brink. A lot of it is still stress and problem solving. Like the kid doesn't want to go but she isn't telling you why and is using behaviors. So that behavior in the morning had an antecedent days before, weeks before. 

[PeterPan]

This is THE book when you want to learn to FBA behaviors for the ABCs (antecedent, behavior, consequence). It could help clarify what you're seeing by helping you realize antecedents and what consequences you were using and whether they were making an improvement per the data. When situations are complex, it helps to make data. When I finally started behavior logging my ds it was eye-opening.

                                            Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)                                     

[PeterPan]

9 minutes ago, Storygirl said:

Right now, I feel like I would have been a healthier person and would not feel so broken if I had not adopted so many children.

Oh my goodness Story!! You realize how jealous I am of you sometimes with your clan and menagerie? I mean I know it feels crazy, but you've become stronger with it and will have the joy of these kids and these relationships. I have two and my dh wouldn't adopt.

So you have the work but also the privileges.

You would have the same health problems even if you had less kids. 

[PeterPan]

58 minutes ago, kbutton said:

I guess I'm saying that I personally needed a "why" to implement some of the suggestions that people are offering. That why, in our case, was ASD. There is no way that without considering that possibility as valid would I have felt like I could choose to parent so radically different, aside from some of the verbalizing strategies I tried.

This is HUGE, so I wanted to make sure it didn't get lost. 

[PeterPan]

3 hours ago, maize said:

The first key to that is distraction

Fwiw there are a lot of levels to that very wise post by Maize. There's the interoception component, where they realize what their body is feeling and learning how to make choices that help them feel better. The other thing though is that sometimes it requires a fresh person. Like in professional settings, they will rotate through people, where no one drops the expectations, but they just come in fresh. It's a strategy. Fresh energy.

Now my ds, when he was very upset, would need time alone, no input. But now he can handle a distraction and actually find it helpful. And if the spouse can be on the same page, you can trade off like this. But if you're needing to function on that level, you need a diagnosis and a behaviorist and professional help, just saying.

[kbutton]

16 minutes ago, PeterPan said:

This is THE book when you want to learn to FBA behaviors for the ABCs (antecedent, behavior, consequence). It could help clarify what you're seeing by helping you realize antecedents and what consequences you were using and whether they were making an improvement per the data. When situations are complex, it helps to make data. When I finally started behavior logging my ds it was eye-opening.

                                            Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)                                     

...and to some extent, everyone has ABCs and everyone can benefit from ABA. We just tend to ABA ourselves, lol! Setting timers to get off the forum, for example. 😉 

It's not wasted to look at this stuff even if autism doesn't turn out to be in the mix.

[PeterPan]

4 minutes ago, kbutton said:

Setting timers to get off the forum, for example. 😉 

LOL I know. Apparently I've got norovirus, so it's either sit here or sit in the sun. So make the sun appear so I can go out. It's sorta in and out of the clouds right now. 

[Pen]

2 hours ago, kbutton said:

I see bits of both, and I know families where there is one or the other and some families with both, but in none of those cases did it become clear quickly, which is why I would look for solutions that include at least some ASD strategies or take into account the social thinking deficits of ASD. It's not likely to "hurt" anything for the trauma, but ignoring potential ASD traits could delay help for the trauma stuff because life would continue to be "too hard" without those ASD strategies.

 

Ok.  I can understand that POV. And you probably saw some threads I didn’t where it looks more like ASD.  I missed school rules thread, I think.

What Point I am trying to make though coming from foster/ adoption experience background is that there almost certainly is Trauma.  There are ACE adverse events, that added up make it almost impossible for there not to be.

And the behavior that I have read that is  described in threads I have read (which isn’t all of them obviously) is quite typical of foster / adoption trauma kids IME without needing any extra disorder (like ASD, RAD, ODD etc)

So I’m not arguing that the child cannot have ASD.  Maybe she does have.  But, yes, I am arguing that it needs to be presumed that she has PTSD.  To put it another way, when I started foster education,  I was told to assume PTSD because of the background   Just being removed from (however and whenever it happens) the birth family is an ACE.  Usually the circumstances causing that are another ACE—and if stress and emotions affect the fetus that may have been another even before birth.  Then the situation removed to (such as foster or orphanage, even if trying to do best it can possibly do) is likely another ACE and so on. And then, even if the situation was bad, move out of orphanage or foster home is another separation from caregiver another separation from familiar circumstances, so another adverse childhood event.  Moves, whether local or international, can be another ACE.  So the amount of emotional trauma by age 3 can be huge.  

(ETA It’s the relatively rare child who is resilient enough to not have trauma from that afaik

so to me to follow up from Child was adopted out of a Chinese orphanage at age 2 with conclusion that ASD is likely and PTSD unlikely seems backwards particularly since they can look similar )

 

Quote

(Though things like therapeutic listening or EMDR might not be areas that would be held back by a lack of clarity diagnostically).

I also don't want the potential ASD traits to get ignored--if this is a both situation, it's far easier for the ASD to be missed, particularly when we're talking about a girl that seems to be pretty bright. If one is open to the possibility of ASD, it's easier to start reading and seeing more traits and have an "aha" moment, or to ask those questions. Until you have a kid or a close friend has a kid with an ASD profile that is kind of borderline, it's easy to miss and that can delay effective solutions.

So, not trying to argue...just highlighting some details that could be a big deal in some circumstances.

Either way, ASD, trauma, or both will require a fair amount of trying things out, tweaking them, etc. 

 

So again, not trying to argue in a negative way, but this is probably *at least*  Trauma.  It may also be ASD .  I  think assumption that there may be no trauma , only ASD is not impossible, but unlikely in an adoption situation like this.  

Quote

I am trying to give bethben more filters/words for some of the specific behaviors because that's exactly what I needed. Until I could actually justify saying, "that's a potential ASD trait," I was left with, "this is a conduct disorder." While many of us can see ways to give with conduct issues more tools, most of us got there via the firestorm of learning about special needs. I would never expect a parent without that background to be able to make that leap unless they were coming from a trauma/adoption/foster care background with some pretty good experience under their belt. I still think the "give them more tools" mentality is a big leap for most parents. Outside of adoption/SN, I am far more likely to encounter harsher parents due to behavior issues or more lax parents that turn a blind eye--those are more typical responses to difficult kids that I see IRL. 

 

I agree.

Edited May 2, 2019 by Pen

[Pen]

@PeterPan 

was this the film https://youtu.be/u9nQkcElujA you referred to ?

if so, I watched it and a big thing that jumped out at me was that family wasn’t getting the family therapy they needed until crisis and legal system were involved 

[Pen]

http://cocaf.org/coparc  is a Colorado (iirc Colorado is @bethben state?) post adoption resource. You may not be eligible for their services because the child was not adopted out of the child services system.  However, they may be able to help guide you to a good psychiatrist with experience with adopted kids.  

I think an excellent psychiatrist and excellent therapist (perhaps same person , perhaps not) is needed.

and probably, as in the movie, therapists for parents too. 

[Pen]

53 minutes ago, PeterPan said:

This is THE book when you want to learn to FBA behaviors for the ABCs (antecedent, behavior, consequence). It could help clarify what you're seeing by helping you realize antecedents and what consequences you were using and whether they were making an improvement per the data. When situations are complex, it helps to make data. When I finally started behavior logging my ds it was eye-opening.

                                            Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)                                     

 

Yes.  Even if not autism behavior logging could help.

Possibly while at it log food etc, because there are probably still more allergens and sensitivities.

(I continue to suspect wheat or gluten, which seemed like dairy another thing the child ate in quantity, as well as because it’s a common trigger)

and something is causing the hives.

it’s a lot to do.  Hard in itself, I know!

[PeterPan]

Yes, you would log food because it was an antecedent.

So like if you look at behavior logging forms where people are really trying to sot that out, they'll include food, yes. And it will just be boxes to tick, like had breakfast, no breakfast, had exposure to known allergen (milk, whatever), no exposure.

Edited May 2, 2019 by PeterPan