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cognitive issues-please help


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(I originally posted this on the high school board, but think this one might be a better place)

 

I feel so discouraged & need help.  My dd has chronic Lyme disease, which I've discussed here previously.  Due to this (and not knowing she had it for so many years) her studies have suffered and have been extremely sporadic and all over the place.  She has gotten treatment, and physically is doing so much better, for which I am so thankful.  She also went from not being able to do any school, or even reading (had to keep reading the same page over & over to try and comprehend anything) to be able to handle a regular schedule.  She does read and enjoys it now.  She loves music, and started guitar last year.  

 

I thought she had greatly improved cognitively, but hadn't realized until now how much everything is still a huge struggle for her.  She is able to read novels and enjoys them, but it seems like anything else (science, geography, writing) doesn't stick.  She tells me she is able to read & understand the information, but almost immediately forgets the content, so her long-term memory isn't good.  Whenever she does quizes or tests, she has to look in the materials for the answers.  I am not pushing her at all, but she is concerned about the future, going to college, graduating "on-schedule".  She is very worried about how she will take tests in college and just function there, period.

 

Last year, I searched to resources to help, and found a program used by Bridgeway Academy, "LD Hope".  http://ldhope.org/ .  It is an educational therapy, and she's been using it for 7mos.  She does it for approx. 45min a day, and hasn't seen much progress.  It specifically was supposed to help with her long-term memory.  Since this hasn't seemed to have worked, we are both so discouraged.  I am heartbroken for her, because she feels she won't ever be "normal". (Her words)  

 

At this point, I am looking for anything else anyone can recommend we try, and also am wondering what kind of testing we can do to see where she's at.  Maybe it isn't as bad as she thinks-I just don't know.  I hate to see this constant, constant struggle.  She basically hates school, but spends most of her time doing it, because she feels she has to, and it's hard to get her to do fun things.  I keep telling her she needs to have fun and experience life, but she always says she can't, she doesn't have time, etc...

 

Please, please help with any suggestions.

 

Tammi

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:grouphug:  :grouphug:  :grouphug: 

 

I don't have any specific tried and true method to help her that I would be able to recommend, but has she had neurological testing?  I would consider the possibility of getting neuropsychological testing to see where she is at, not just strictly at what level she is at academically.  With official testing, depending on the results, you might have better answers for where her brain function is specifically still off (and have a better idea then of what she might need to help her through) plus she might be able to get accommodations on the SAT/ACT and in college.

 

Also, is she willing to take more time to get her diploma?  It may be very unrealistic to try and cram in all the things necessary to graduate High School on a standard time line.  Is she amenable to taking an extra year?

 

How much scaffolding are you providing her?  Do you read the material with her?  Does she try to plow through large amounts or could she do shorter segments?  Do you and she discuss the material afterwards?  Work as a team to come up with ways to remember the content?  Or is she just plopping herself in front of a text book, reading through it all and hoping to remember afterwards?  (FWIW I never learned well that way).  Would she do better if the material were being presented both through auditory input and visually?  As in, would reading the material on a Kindle while it also is read to her help?  Does she do better with video explanations than text based?  Do you help her create ways to review the material in very tiny chunks that are gone over often?  Maybe with Quizzlet and other resources?

 

Have you looked at the resources through AGS or Walsh Power Basics?  AGS and Power Basics tend to have bigger print, cover material in more broken down pieces, cut it all down to more of the needed material and less of the "extras", use more basic wording, etc.  I am linking a site that has a lot of material designed for students that have academic struggles, including AGS and Power Basics textbooks.  What is helpful with this site is that you can look inside the books and see how the books present the information to determine if something along these lines might be a better fit.  I would suggest you try to find used copies through Amazon if you do decide to try this route, though.  That site charges a pretty penny for their materials (because schools buy from them).  She would probably want the Alternative version for AGS texts.  There is a Foundational version but I don't think she would need to go that basic.  The first link below is the overall site.  The second is an example of an AGS textbook.

 

https://www.wiesereducational.com/spages/textbook-choices.htm

https://www.wiesereducational.com/products/biology-cycles-of-life-mm8081.htm

 

Also, for science Conceptual Academy has a really good system.   Small segments of reading followed by a short video and a short quiz to reinforce the material just read.  The voice of the presenter is very soft and pleasant.  The videos are very informative but not long at all.

 

https://conceptualacademy.com/

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:grouphug:  :grouphug:  :grouphug:

 

I don't have any specific tried and true method to help her that I would be able to recommend, but has she had neurological testing?  I would consider the possibility of getting neuropsychological testing to see where she is at, not just strictly at what level she is at academically.  With official testing, depending on the results, you might have better answers for where her brain function is specifically still off (and have a better idea then of what she might need to help her through) plus she might be able to get accommodations on the SAT/ACT and in college.  Prior to this school-year, we were mainly concerned with getting her physically healthy again, and just seeing what she was capable of doing.  Once she started reading again, and seemed to be improving cognitively, we just went with it.  :sad:  Obviously, I'm second-guessing every decision, now.  I would like her to get tested, but haven't explored anything yet.  Where do I start???  I feel like we've been to every kind of specialist (gastro, rhumotologist, physical therapist, nutritionist, homeopath, psychologist) for all of her other stuff, but now am in the dark.

 

Also, is she willing to take more time to get her diploma?  It may be very unrealistic to try and cram in all the things necessary to graduate High School on a standard time line.  Is she amenable to taking an extra year? I have been trying to convince her to take one more year, and she's adamantly against it.  She feels so "different" already, she hates to be considered "behind".  I've talked about it over & over with her, but still no go.  I did convince her that doing 1 year of Community College would be the best thing for her, so I feel that some of the pressure has been relieved academically.

 

How much scaffolding are you providing herr?  Do you read the material with her?  Does she try to plow through large amounts or could she do shorter segments?  Do you and she discuss the material afterwards?  Work as a team to come up with ways to remember the content?  Or is she just plopping herself in front of a text book, reading through it all and hoping to remember afterwards?  (FWIW I never learned well that way).  Would she do better if the material were being presented both through auditory input and visually?  As in, would reading the material on a Kindle while it also is read to her help?  Does she do better with video explanations than text based?  Do you help her create ways to review the material in very tiny chunks that are gone over often?  Maybe with Quizzlet and other resources? For years, we have struggled when it came to my "teaching" or "helping" her.  Due to her learning difficulties, she hates school and wants to just get it done.  She prefers as much independent learning as possible, so I have attempted to put together curriculum that enables her to do that.  The EIW & EIL both have short dvd lessons, and easy to follow workbooks, TT isn't ideal, but she's used to it & seems to get through it.  Physical Science (which she is just finishing up) was a big struggle-all of the reading.  Quizzlet is a good idea.  

 

Have you looked at the resources through AGS or Walsh Power Basics?  AGS and Power Basics tend to have bigger print, cover material in more broken down pieces, cut it all down to more of the needed material and less of the "extras", use more basic wording, etc.  I am linking a site that has a lot of material designed for students that have academic struggles, including AGS and Power Basics textbooks.  What is helpful with this site is that you can look inside the books and see how the books present the information to determine if something along these lines might be a better fit.  I would suggest you try to find used copies through Amazon if you do decide to try this route, though.  That site charges a pretty penny for their materials (because schools buy from them).  She would probably want the Alternative version for AGS texts.  There is a Foundational version but I don't think she would need to go that basic.  The first link below is the overall site.  The second is an example of an AGS textbook. I'm not familiar with either AGS or Power Basics.  Thanks for the links.

 

https://www.wiesereducational.com/spages/textbook-choices.htm

https://www.wiesereducational.com/products/biology-cycles-of-life-mm8081.htm

 

Also, for science Conceptual Academy has a really good system.   Small segments of reading followed by a short video and a short quiz to reinforce the material just read.  The voice of the presenter is very soft and pleasant.  The videos are very informative but not long at all.  I did just discover Conceptual Academy this year, and was considering them for Biology next year.  I talked her into doing the Ornithology course this year, because she is passionate about birding, and reads field guides like they were novels.  And the info. seems to be the one thing she is able to remember-she can identify any bird out there!  There is quite a lot of reading, however.  I wasn't aware of it until after we received the book.

 

https://conceptualacademy.com/

Thanks so much for your reply; I've been trying to fix everything for so long and feel like nothings helping.

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I'm sorry the cognitive therapies you've tried so far have not helped. I don't think they *can* help if the problem is her body needing time to heal. I think you could discuss with her the idea that healing is an ongoing process, that where we are now isn't where we'll be in 5 years or 10 years or 15 or 20. People are constantly growing and changing. It's not like we have some window beginning at 18 and closing at 22. For me, I went through this myself with some health problems (CFS, MCS, etc.), and I can definitely say some things take time. 

 

I think also that being very stressed about academics would lead her to fatigue herself, which is not good for healing. I think, as the mom and homeschool teacher, you could quietly change/modify/tweak her requirements to make them less fatiguing. She has nothing to compare this to. If she excels at the birding, piano, guitar, watercolor, and 4H you listed (that's a lot!!), I would continue to nurture those. I would consider shifting the discussion to what she would like to do over the next few years, how those things could be a logical extension of what is going well now. I would drop discussion of college. I'm not saying drop the *idea* of college, just the discussion. How about stages? How about continuing to get well, embracing life as it is now, doing more of what IS working, and letting things come as they come.

 

If she enjoys those craft things she's doing, maybe she'd like to make things to sell on Etsy. I know someone whose grown daughters are both making a living selling on Etsy. There are lots of ways to earn a living now besides going to college. Many people go to college too early, before they realize their gifts or what talents they have that they ought to nurture. She ought to pursue career testing and career counseling. We did it with my dd, and it was very apt! It helped her realize she had strengths she had never anticipated.

 

I agree with the others that you would be well-advised to pursue neuropsych testing. I would spend time calling around and talking with them first. If you could find someone who had experience with Lyme, that would be good. At the very least, s/he should be non-averse on it, since it's a controversial diagnosis and treatment. But I think some good psych testing plus the career testing (which sometimes the psych can also do for you) would get you pointed in a good direction.

 

It's very possible that she'll continue to improve with time. I wouldn't give up hope on that.

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No, I wouldn't pressure her on the extra year thing, since she doesn't want it. I wanted that for my dd, and there's a sense in which it would have been good for her. I was right, but reality is they have to forge their own way and their own path. This maturity bird is a thing that sets off and wants to fly, irrespective of us. So let her fly, let her figure it out.

 

The important thing is to flip this to positive and start nurturing some strengths. Do the career testing. Call your local CC and see if they have to enroll to do the career testing. If she takes even just one class (photography, anything) she'd get access to all the student services. Our local cc offers photography online and the state will pay for it for DE. So, given her energy issues and age, online classes in areas of strength (not more reading, ugh) would be an option. 

 

As far as the textbooks, are you getting them as ebooks so she can use text to speech? Almost any device can do this now. Even a $100 kindle can to tts.

 

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I'm sorry the cognitive therapies you've tried so far have not helped. I don't think they *can* help if the problem is her body needing time to heal. I think you could discuss with her the idea that healing is an ongoing process, that where we are now isn't where we'll be in 5 years or 10 years or 15 or 20. People are constantly growing and changing. It's not like we have some window beginning at 18 and closing at 22. For me, I went through this myself with some health problems (CFS, MCS, etc.), and I can definitely say some things take time. 

 

I think also that being very stressed about academics would lead her to fatigue herself, which is not good for healing. I think, as the mom and homeschool teacher, you could quietly change/modify/tweak her requirements to make them less fatiguing. She has nothing to compare this to. If she excels at the birding, piano, guitar, watercolor, and 4H you listed (that's a lot!!), I would continue to nurture those. I would consider shifting the discussion to what she would like to do over the next few years, how those things could be a logical extension of what is going well now. I would drop discussion of college. I'm not saying drop the *idea* of college, just the discussion. How about stages? How about continuing to get well, embracing life as it is now, doing more of what IS working, and letting things come as they come.  I wholeheartedly agree with you!  I have tried to encourage her to focus on all of her creative stuff (art, music, photography, birding), and have very much stressed that she is definitely learning by doing those things.  She suffers from anxiety & OCD, and the therapist & I both have told her there isn't any "timelilne" other than her own, that she needs to get physically and emotionally strong and well and the rest can wait.  She truly feels she can't let up, however.  I have tried to minimize the classes she's taking, as much as possible, but she knows the graduation requirements. I convinced to to wait a year on biology, not do a foreign lang. until next year, and do geography this year (a 9th grade course) after not doing anything last year.  I'm hopng to switch her to WWS 1 which will give her a solid foundation and won't be as rigorous as EIW & EIL.  Because of her anxiety & OCD, it would make her more anxious to reduce her classes even more.  She obviously doesn't need to do all of the extra-curriculars, but those things actually bring her pleasure, so I hate to eliminate them.  (She also feels a sense of accomplishment from doing them, because she excels in those areas)

 

If she enjoys those craft things she's doing, maybe she'd like to make things to sell on Etsy. I know someone whose grown daughters are both making a living selling on Etsy. There are lots of ways to earn a living now besides going to college. Many people go to college too early, before they realize their gifts or what talents they have that they ought to nurture. She ought to pursue career testing and career counseling. We did it with my dd, and it was very apt! It helped her realize she had strengths she had never anticipated. I have told her that we don't expect her to go to college and it's ok if she doesn't know what she wants to do right now-but again, it's her own thoughts that are the problem.

 

I agree with the others that you would be well-advised to pursue neuropsych testing. I would spend time calling around and talking with them first. If you could find someone who had experience with Lyme, that would be good. At the very least, s/he should be non-averse on it, since it's a controversial diagnosis and treatment. But I think some good psych testing plus the career testing (which sometimes the psych can also do for you) would get you pointed in a good direction. You are right, we need to do this.

 

It's very possible that she'll continue to improve with time. I wouldn't give up hope on that. We are praying that this is the case.  I've tried to get her to see how much she has improved in so many areas after over 2 years of treatment, but unfortunately, she only sees where she is "lacking".  Thank you for your thoughtful & helpful responses!

 

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It sounds like the anxiety and OCD are really affecting her right now. I would evaluate *why* they are so strong right now and pursue appropriate treatments. For some people, it's a methylation issue (over or under). Has she had an eval for them? If she has not, I would be questioning whether your labels are even correct. She could have something else going on as well, like some ADHD, that would explain the reading focusing issues. Methylation issues are treatable. ADHD is treatable. 

 

It also sounds like she would do well to pursue some mindfulness or CBT. They would help with the anxiety and OCD and also bump her EF, helping with the academics. Mindfulness or CBT, done either with materials you find or a psych, could be EXTREMELY helpful to her.

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My dd did WWS later like that. Iirc we did WWS1 in 8th, WWS2 in 9th, but really I'm forgetting. Doesn't matter. It was good for us and dd has gone on to do very well in college writing. 

 

I agree with you about not dropping the extra-currics. :)

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It sounds like the anxiety and OCD are really affecting her right now. I would evaluate *why* they are so strong right now and pursue appropriate treatments. For some people, it's a methylation issue (over or under). Has she had an eval for them? If she has not, I would be questioning whether your labels are even correct. She could have something else going on as well, like some ADHD, that would explain the reading focusing issues. Methylation issues are treatable. ADHD is treatable. 

 

It also sounds like she would do well to pursue some mindfulness or CBT. They would help with the anxiety and OCD and also bump her EF, helping with the academics. Mindfulness or CBT, done either with materials you find or a psych, could be EXTREMELY helpful to her. Her therapist mainly uses CBT with her, and while she has overcome a lot of hurdles, she still suffers.  I have been looking into biofeedback and found someone I think who would be a good fit.  She was tested for methylation & pyrolle disorders, as well as copper overload.  She is taking compounded vitamin/minerals that are specific for her issues.  She has been doing CBT for over 6 years-long before we knew about the Lyme.  I'm not sure what else we can do therapy-wise, but I'm willing to try anything.

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Sounds like you're on it then. Both my kids did neurofeedback (Zengar I think, I forget). It overloaded my dd and didn't do anything good for her. It seem to zap my ds (no other way to explain it) and he didn't really seem better for it either. I think he had 30-some sessions and we stopped rather than continuing to the 40+ they recommend for autism. Personally I think it's unregulated. It's questionable to me to take someone who was not exclusively non-verbal but still not able to self-advocate and go doing things to his brain. My dd didn't like how it made her feel, and she could say so. It's why we discontinued with both. The theory was good, but in practice it was just, well that's all.

 

Even with CBT and mindfulness, there are more methodologies. It might be time for some variety. Or have you thought about an actual psych med? Or maybe some SAM-e? It's a methyl donor, so that could be good or bad, depending on the situation.

 

It's a hard stage. We want to make everything better, and sometimes we can't.

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Sounds like you're on it then. Both my kids did neurofeedback (Zengar I think, I forget). It overloaded my dd and didn't do anything good for her. It seem to zap my ds (no other way to explain it) and he didn't really seem better for it either. I think he had 30-some sessions and we stopped rather than continuing to the 40+ they recommend for autism. Personally I think it's unregulated. It's questionable to me to take someone who was not exclusively non-verbal but still not able to self-advocate and go doing things to his brain. My dd didn't like how it made her feel, and she could say so. It's why we discontinued with both. The theory was good, but in practice it was just, well that's all.

 

Even with CBT and mindfulness, there are more methodologies. It might be time for some variety. Or have you thought about an actual psych med? Or maybe some SAM-e? It's a methyl donor, so that could be good or bad, depending on the situation.

 

It's a hard stage. We want to make everything better, and sometimes we can't.

Yes, I am looking at some other therapy options.  DD has been on a low dose of fluoxetine for years, in addition to the therapy.  Even at the low dose, she hates how it makes her feel, and she has gone even lower on it.  I have spoken to her about switching to something else, as has her therapist.  She wants to try as much as possible to "work on things" without upping it or switching, so that's where we are.  Maybe the SAM-e would help.  Thanks for the encouragement.

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