Suggestions for getting anxiety under control thats preventing learning?

[BlueTaelon]

My 10yo has a list of issues and has been getting full time ABA through school for all school hours and its been a disaster, epic tantrums lasting several hours every single day. We were enrolled in a K12 VA, the school has been awesome in trying to help, they have bent over backwards but after a year of these tantrums I just can't take it anymore so were going back to traditional homeschooling and planning a low key year while we focus on coping strategies. She has an ASD dx along with ODD and anxiety. I recently became aware of a condition called Pathological Demand Avoidance Syndrome which at this time is pretty much only accepted over in the UK but it describes my dd pretty well. Basically the kids are little control freaks due to anxiety, we're looking into the bio med stuff to help but any suggestions on how to help her get a grip so we can teach her? She learned NOTHING when I put her in B&M for 2nd, enrolled in K12 for 3rd as its been awesome for my teen and even with a crazy amount of support she's only about half way through the year progress wise and were doing summer school trying to finish out the year, I'm not going to hold my breath on making it because its been difficult getting this far, the kid just melts down as soon as you sit her down to work on the OLS. Its not that the work is to hard, she won't even try due to her extreme fear/anxiety. On days when she decides she wants to do it she can get though an entire days work in about 2-3 hours when most kids are taking 6-7 hours. What I'm hearing from other PDA parents is they end up unschooling, which I'm not all that sure I'm ok with.

 

So, ideas on controlling the anxiety besides medication? We know she needs heavy work and I'm turning my living room into a therapy room so I'm totally open to idea's there. I'm wondering if some form of meditation would be helpful? Massage?

 

Recc's for curriculum happily accepted too. Pretty sure I'm going to get her Teaching Textbooks 3 since thats awesome for math anxious kids, thinking of FLL but need to look into it again since its been several years since I looked at it. K12 testing says she's 3rd grade for language arts and just starting 2nd grade for math (K12 is 12-18mo  ahead of B&M). I've got The Writers Jungle around here somewhere I'll probably use for writing but this year will basically focus on the 3R's.

 

[OneStepAtATime]

Please take my responses as those of a parent with no expertise in this field.  My DS has had some similar issues over the past two years but not to the extreme that you seem to be dealing with.   :grouphug:  :grouphug:  :grouphug:

 

What you might consider:

• Backing off literally ALL structured school work for several weeks.  Give her a detox period.  She is still young.  Don't worry about whether she is functioning at grade level/finishing the current grade level.  Goodness, her academics are small potatoes compared to the other issues.  She has years to learn reading/writing/math/history/science.  Truly, there is time for that.  Right now she is struggling in ways that could impact her forever.  Those have to take precedence.
• Make sure her sleeping/eating schedule fits well with her natural patterns.
• Find a therapist that specializes in kids with these challenges and possibly does Cognitive Behavior Therapy.  Is she seeing a therapist already?
• Maybe do some projects or work on acquiring a special skill or hobby if it would give her sense of purpose and accomplishment.
• Eventually, after a detox period, I would try to focus strictly on trying to rebuild confidence in her academics and reduce the anxiety and help her get over what is amounting to PTSD from her academics through interest led learning with NO pressure, as well as fun activities, lots of hugs (when accepted), smiles, listening to audio books of her choice if she likes that, letting her discuss whatever might be of interest to her, etc.  
• Finding materials that are better suited to her interests once she is in a better place for taking on more formal academics.  Make sure to start with only one or two core subjects, keep lessons VERY short, and try to make the materials fit her learning style and interests as much as possible.  Build from there.

I feel for you and send my empathy and hugs.  It is so hard when our children struggle like this.  There is no easy fix, nothing we just need them to study harder for and it all gets better, no surgery that heals the damage...and no easy, clearly laid out path for how to move forward...   :grouphug:  :grouphug:  :grouphug:

[mommymonster]

We struggle with anxiety here. I have yet to find something to help. I wish you the best.

 

<Edited due to privacy...>

Edited July 27, 2016 by mommymonster

[Kanin]

Sorry you and your daughter are having such a rough time  :grouphug: I agree with OneStep that academics are small potatoes compared to her emotional needs - from what you wrote, it sounds like she's very smart and capable of working/learning quickly! Good luck with everything, and keep us updated! I'm curious to see what you come up with on your journey.

[Ravin]

What Onestep said is good.

 

With my DD, making sure she gets enough sleep is extremely important. So is approaching easy-trigger subjects (in our house, math) at otherwise low key times when she is at her best.

 

We have been steering more towards child-led learning--not that she picks all the materials, but the overall goals, and the pace, and a good deal of the process, is controlled by DD as well as by our observations of what conditions foster her learning best.

 

Finally, you said "besides medication" but medication can make a BIG difference. It seriously can.

 

I'm off to look up Pathological Demand Avoidance Syndrome. If it's what it sounds like, it might fit my DD quite well.

[sbgrace]

:grouphug:  In my limited experience with my own son and close friends, you must get the anxiety under control before the child will be able to learn. So unschooling, or something very similar to that, until you get that piece worked out seems like your only option.

 

I would find a really good Cognitive Behavioral Therapist who can work with anxiety in kids. Get him/her on board ASAP. In my personal experience, though, often the anxiety level needs to be brought down to be able to make therapy progress too.

 

Since you mentioned biomedical, supplements you could check might include l-theanine (short acting here/not enough/we still use it). My son does well with n-aceytl cysteine, but that's particular to OCD in my research. He benefits from Culturelle, which is a probiotic. I don't know why, but he carries chronic c-diff, so maybe that's why. I don't know about dosing but Inositol has helped a friend's daughter.

 

But...a friend's son couldn't learn at all due to anxiety. Really low dose SSRI has changed his life. He was 2nd grade I think when he started. I know his mom really struggled with that choice, but he couldn't even do therapy. He's doing great now, in every way. Similarly, a family member finally placed their daughter on medication (I think Prozac in that case). She's absolutely thriving now, night and day. 

 

Medication would probably be the fastest and most certain way to get her anxiety regulated. Regulated, she could better learn coping skills through things like Cognitive Behavioral Therapy, Mindfulness, etc. Medication doesn't have to be forever.

 

:grouphug:

Edited July 27, 2016 by sbgrace

[BlueTaelon]

:grouphug:  In my limited experience with my own son and close friends, you must get the anxiety under control before the child will be able to learn. So unschooling, or something very similar to that, until you get that piece worked out seems like your only option.

 

I would find a really good Cognitive Behavioral Therapist who can work with anxiety in kids. Get him/her on board ASAP. In my personal experience, though, often the anxiety level needs to be brought down to be able to make therapy progress too.

 

Since you mentioned biomedical, supplements you could check might include l-theanine (short acting here/not enough/we still use it). My son does well with n-aceytl cysteine, but that's particular to OCD in my research. He benefits from Culturelle, which is a probiotic. I don't know why, but he carries chronic c-diff, so maybe that's why. I don't know about dosing but Inositol has helped a friend's daughter.

 

But...a friend's son couldn't learn at all due to anxiety. Really low dose SSRI has changed his life. He was 2nd grade I think when he started. I know his mom really struggled with that choice, but he couldn't even do therapy. He's doing great now, in every way. Similarly, a family member finally placed their daughter on medication (I think Prozac in that case). She's absolutely thriving now, night and day. 

 

Medication would probably be the fastest and most certain way to get her anxiety regulated. Regulated, she could better learn coping skills through things like Cognitive Behavioral Therapy, Mindfulness, etc. Medication doesn't have to be forever.

 

:grouphug:

 

She has been getting therapy for 3 years along with community based rehab and has made no progress. We changed therapists last week to one who only deals with kids with Autism. The therapists have been at a loss because she can tell you what we think she's doing wrong behavior wise, what she should do and that she doesn't want to do what you want because she enjoys getting reactions out of people or what ever the undesired behavior is. She's one of those kids who likes getting reactions out of people, her favorite target is my teen who does not handle it well at all. She's worked with 4 different ABA therapist for school the past year and its been awful, from what I'm reading about PDA her reaction to them is typical. School has to be her idea. For example yesterday I wanted her to just do 1 page of the TT placement test and that was a big no, an hour later she asks me a math question and she's doing the thing on her own happily.

 

What Onestep said is good.

 

With my DD, making sure she gets enough sleep is extremely important. So is approaching easy-trigger subjects (in our house, math) at otherwise low key times when she is at her best.

 

We have been steering more towards child-led learning--not that she picks all the materials, but the overall goals, and the pace, and a good deal of the process, is controlled by DD as well as by our observations of what conditions foster her learning best.

 

Finally, you said "besides medication" but medication can make a BIG difference. It seriously can.

 

I'm off to look up Pathological Demand Avoidance Syndrome. If it's what it sounds like, it might fit my DD quite well.

She gets 10-11 hours a night, The Fitbit I put on her said she was waking an average of 40 times a night, sleep study disagreed but funny thing happened, her wakings went down to about 10 a night when we added the weighted blanket but I don't get any sleep since every time she moved it would fall off and I'd have to re position it. Replacing it with a much bigger, twin size option is at the top of my list. I know medication can make a big difference, I also know she's got a biological issue, 2 of them actually that cause anxiety and aggression, I can't get her to the Dr to get the lab orders for another week then we can't see the specialist until Sept since I have to pay out of pocket. Anyway I'm trying to avoid medication as we've had bad experiences with them and know about the Pyroluria and high free copper issues.

 

Please take my responses as those of a parent with no expertise in this field.  My DS has had some similar issues over the past two years but not to the extreme that you seem to be dealing with.   :grouphug:  :grouphug:  :grouphug:

 

What you might consider:

• Backing off literally ALL structured school work for several weeks.  Give her a detox period.  She is still young.  Don't worry about whether she is functioning at grade level/finishing the current grade level.  Goodness, her academics are small potatoes compared to the other issues.  She has years to learn reading/writing/math/history/science.  Truly, there is time for that.  Right now she is struggling in ways that could impact her forever.  Those have to take precedence.
• Make sure her sleeping/eating schedule fits well with her natural patterns.
• Find a therapist that specializes in kids with these challenges and possibly does Cognitive Behavior Therapy.  Is she seeing a therapist already?
• Maybe do some projects or work on acquiring a special skill or hobby if it would give her sense of purpose and accomplishment.
• Eventually, after a detox period, I would try to focus strictly on trying to rebuild confidence in her academics and reduce the anxiety and help her get over what is amounting to PTSD from her academics through interest led learning with NO pressure, as well as fun activities, lots of hugs (when accepted), smiles, listening to audio books of her choice if she likes that, letting her discuss whatever might be of interest to her, etc.  
• Finding materials that are better suited to her interests once she is in a better place for taking on more formal academics.  Make sure to start with only one or two core subjects, keep lessons VERY short, and try to make the materials fit her learning style and interests as much as possible.  Build from there.

I feel for you and send my empathy and hugs.  It is so hard when our children struggle like this.  There is no easy fix, nothing we just need them to study harder for and it all gets better, no surgery that heals the damage...and no easy, clearly laid out path for how to move forward...   :grouphug:  :grouphug:  :grouphug:

Thats pretty much our plan, I just worry about not having some kind of education plan in place because we do deal with so many therapists, all we need is one therapists who disagrees and we get CPS in our lives which I don't want. BTDT a couple times when the girls were younger, all I got told was "good job mom! wish more were like you" but its still stressful as heck. I know I should relax, my teen missed most of elementary school due to her health issues and when she was finally in a place to really start learning in 7th they placed her in high school classes and now just 2 years later she's supposed to start college next month 2 weeks after turning 16 but she doesn't have the level of issues as my 10yo even though she's got serious issues.

 

 

Thank you everyone for being kind and understanding, I was very nervous about posting about this but needed some ideas from someone other then our frustrated therapists who were out of ideas.

[BlueTaelon]

We struggle with anxiety here. I have yet to find something to help. I wish you the best.

 

<Edited due to privacy...>

 

Thats ok, I did see the original post, did you find the answer you were looking for? If not we also deal with a condition called Pyroluria and methylation issues, some people poo poo the conditions but I don't care, treatment saved our lives. We have had multiple therapists that deal with my teen sit up and take notice of the changes to the point neither of her school ABA therapists will work with her until she's had her morning vitamins because she's literally non functional and aggressive until about an hour after she's had them. It helped me with my severe depression and helped really dial back the tantrums in my 10yo, she can be very pleasant these days unless you ask her to do a non preferred activity. We see Mensah Medical for treatment as its hard to find a good practitioner here in the US.

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug: 

 

 It is sooo hard to be in this position and try to find the right path for your child.  Ugh!  I hope with all my heart you find things to help.  I wish I had more knowledge.  

 

:grouphug:  :grouphug:  :grouphug:

[Ravin]

I thought I would throw in that we also went back to homeschooling because the schedule demands of online school were a poor fit for DD.

[mommymonster]

Thats ok, I did see the original post, did you find the answer you were looking for? If not we also deal with a condition called Pyroluria and methylation issues, some people poo poo the conditions but I don't care, treatment saved our lives. We have had multiple therapists that deal with my teen sit up and take notice of the changes to the point neither of her school ABA therapists will work with her until she's had her morning vitamins because she's literally non functional and aggressive until about an hour after she's had them. It helped me with my severe depression and helped really dial back the tantrums in my 10yo, she can be very pleasant these days unless you ask her to do a non preferred activity. We see Mensah Medical for treatment as its hard to find a good practitioner here in the US.

 

We have an intake appointment with a psychologist in our area in a few weeks. It's definitely on the list. The kiddo has a complicated medical history, with significant medical trauma, so it's going to be a challenge to tease out a plan for working with him. We've been on the waiting list since February, so... it has been a long time coming.