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NF 1: Neurofibromatosis 1


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#1 pmeilaen

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Posted 06 January 2018 - 05:04 PM

Hello All,

 

I have been trying to find other homeschooling families that homeschool a child with NF 1, but have not been successful so far.  It is a rare disorder and comes with its own set of learning difficulties.  My third grade was diagnosed with it over a year ago now and I had to rethink my overall approach to homeschooling in order to teach her.  First Language Lessons and An Ordinary Parent's Guide to Teaching Reading are actually working very well for her, now that she is a bit older.  I would just love to find some other parents in a similar situation.

 

  



#2 HSsquared

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Posted 06 January 2018 - 07:05 PM

Dear pmeilaen, While I have a SNs child, it is ASD and not NF1. Thank you for sharing a link to understand how broadly it may affect her.
I’m sure many here on the special needs board would be glad to offer our support if we may. What type learning challenges are present? What support are you seeking?


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#3 pmeilaen

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Posted 06 January 2018 - 07:38 PM

I am looking for general recommendations.  It has taking her a long time to learn to read.  She is now reading on a first grade level, but is nine years old.  We have not even tried spelling because it just confuses her.  The same is the case in math.   After trying many programs, we are using RightStart Math now, the level for second grade, and she is slowly making progress.  The biggest challenges she has are headaches that prevent her from doing longer lessons and a very poor memory for facts.  She simply "forgets" what sounds certain letters make and cannot memorize math facts.  We tested her learning style and she is an auditory learner.  We are using a lot of CDs and read-alouds.  She has a very good vocabulary and is bilingual (German/English).  She is very social, outgoing, and does not strike you as a "special needs" child at all.  That is why it is so complicated.  She does not fit into the "normal" special needs categories at all. 

 

What is SN/ASD?    

 

 


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#4 Pegs

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Posted 06 January 2018 - 07:53 PM

Hi pmeilaen. Welcome to the boards.

SN stands for special needs. ASD is autism spectrum disorder.

It's great that you are starting to find programs which are helping your daughter make some progress! I think audiobooks and readalouds are a great idea too - you're really working with her strengths there.

My son struggled with reading for a while because he had some unidentified vision problems. He learnt to read and write okay, but couldn't do either for very long because he'd get headaches. Have you had your daughter's vision checked? Here in Australia we saw a "behavioural optometrist." In the U.S. I think they call them "developmental optometrists," and people find them listed under COVD practitioners.

Edited by Pegs, 06 January 2018 - 07:54 PM.


#5 pmeilaen

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Posted 06 January 2018 - 09:36 PM

Thanks for the explanations.  Her vision is fine, no problems there.  Her optometrist is such a specialist as you are describing.  


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#6 Pegs

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Posted 06 January 2018 - 09:44 PM

Well that's good to know. :)

Sounds like you'll just have to keep on keeping lessons short to avoid the fatigue and headaches.

Hopefully others will have more helpful suggestions for you! Do keep on asking questions - the parents here are a wealth of information and ideas.
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#7 PeterPan

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Posted 06 January 2018 - 10:47 PM

Does she have the intellectual disability component? If she does, that's something a number of moms here will identify with, even if their dc doesn't have NF1. Also we've had people dealing with children with concussions, head injuries, or challenges after chemo, sigh. You can google site search the boards by putting in the terms and site:welltrainedmind.com into your google bar. 

 

It sounds like you're doing the right things, getting evals, figuring out what is causing what. Those headaches sound very hard! Personally, since they are physical in origin, I don't think I'd tell her tough it out. I think I'd use multi-sensory where you can, so she's building more pathways. That way if one hurts, she has more paths. And I think given how strong she is with auditory you're going to want to use tech. Audiobooks are awesome here.

 

Use your Mother Gut and keep it positive. If one path isn't working, say that's ok and try another one. If one area isn't working, say that's ok and try another. Get some balance where her day is 50% what works, not 90% what doesn't work, kwim? Channel to yourself the confidence you would have if you had done this before and knew you knew what you were doing. There's no reason to think someone else's opinion is better than yours or more valid than yours about what is good for her and healthful and what is creating good balance. So go with your gut and create a radical, beautiful, healthy, peaceful, positive balance for her, no matter what that looks like. 

 

Make some goals. Like if she's happy, healthy, growing in kindness, caring about people, able to pursue things she enjoys, able to solve her problems, increasing in independence to the level of her ability, these are good things! For my ds, his reading improved partly because he needed it to do things he wanted to do, that independence piece. So maybe let it come naturally together for her. The materials you're using sound good if they are clicking. If they stop clicking, people can suggest some disability-specific options. There's always another level of detail and support.

 

 


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#8 Storygirl

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Posted 06 January 2018 - 11:29 PM

Has she been tested specifically for the learning disabilities? A lot of what you describe can be seen in someone with dyslexia, or a reading disability, for example. Even if you don't find other families dealing with NF1, I would think that you could utilize many of the same tools that others use with their kids with LDs. The article recommends testing by a neuropsychologist. Have you done that yet? Many here on the Learning Challenges boards have had neuropsych testing done for their children, so that is common ground that we might offer help with.



#9 pmeilaen

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Posted 07 January 2018 - 12:25 AM

Has she been tested specifically for the learning disabilities? A lot of what you describe can be seen in someone with dyslexia, or a reading disability, for example. Even if you don't find other families dealing with NF1, I would think that you could utilize many of the same tools that others use with their kids with LDs. The article recommends testing by a neuropsychologist. Have you done that yet? Many here on the Learning Challenges boards have had neuropsych testing done for their children, so that is common ground that we might offer help with.

 

No, but I do have a wonderful NF 1 brochure with the typical learning difficulties, and one is dyslexia.  The brochure also offers tips on how to help a child in the areas they struggle with.  We do see a neurologist every year and get a lot of support there.  To be honest, right now I don't think we need further testing.  I was just hoping to find some other homeschoolers with similar experiences.  But I will keep your suggestion in mind for the future!    


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#10 pmeilaen

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Posted 07 January 2018 - 12:45 AM

Well that's good to know. :)

Sounds like you'll just have to keep on keeping lessons short to avoid the fatigue and headaches.

Hopefully others will have more helpful suggestions for you! Do keep on asking questions - the parents here are a wealth of information and ideas.

 

Yes, the Charlotte Mason approach of short lessons is good for her and I give her frequent breaks and outdoor time.  I will probably ask more questions when the time to do standardized testing comes.  Those are mandatory in our state.  


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#11 pmeilaen

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Posted 07 January 2018 - 12:56 AM

Does she have the intellectual disability component? If she does, that's something a number of moms here will identify with, even if their dc doesn't have NF1. Also we've had people dealing with children with concussions, head injuries, or challenges after chemo, sigh. You can google site search the boards by putting in the terms and site:welltrainedmind.com into your google bar. 

 

It sounds like you're doing the right things, getting evals, figuring out what is causing what. Those headaches sound very hard! Personally, since they are physical in origin, I don't think I'd tell her tough it out. I think I'd use multi-sensory where you can, so she's building more pathways. That way if one hurts, she has more paths. And I think given how strong she is with auditory you're going to want to use tech. Audiobooks are awesome here.

 

Use your Mother Gut and keep it positive. If one path isn't working, say that's ok and try another one. If one area isn't working, say that's ok and try another. Get some balance where her day is 50% what works, not 90% what doesn't work, kwim? Channel to yourself the confidence you would have if you had done this before and knew you knew what you were doing. There's no reason to think someone else's opinion is better than yours or more valid than yours about what is good for her and healthful and what is creating good balance. So go with your gut and create a radical, beautiful, healthy, peaceful, positive balance for her, no matter what that looks like. 

 

Make some goals. Like if she's happy, healthy, growing in kindness, caring about people, able to pursue things she enjoys, able to solve her problems, increasing in independence to the level of her ability, these are good things! For my ds, his reading improved partly because he needed it to do things he wanted to do, that independence piece. So maybe let it come naturally together for her. The materials you're using sound good if they are clicking. If they stop clicking, people can suggest some disability-specific options. There's always another level of detail and support.

 

I don't think she does, nobody has ever called it that way.  The neurologist talks about learning difficulties.  I normally give her short breaks when the headaches start.  She can sometimes go for days without them and then she has a day when she complains it all day long.  During those days, I just let her do what she wants.  

 

Thanks so much for your encouraging words!  I like the Waldorf approach to homeschooling, but mix it with the classical approach and some Charlotte Mason ideas.  I am pulling materials from those sources, but need to modify them for my daughter.  It takes a lot of time (and do have four other children plus teach German at our local college).  I am a bit worried about the mandatory standardized testing starting in grade 4 or 5 here in NY.  We have used the PASS test (untimed) for our other children when they were that age and will probably do so with her as well, but still.  She has to reach a certain percentage.  I could hold her back another year in order to avoid doing the testing so soon.  I guess I will follow my "mother's instincts" when the time comes!  

 

Thanks again!  



#12 PeterPan

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Posted 07 January 2018 - 09:48 AM

Where we live (Ohio, the US), the homeschooling laws allow kids to do alternate assessments. So they can have a portfolio review and the person certifies they are "performing at ability level." Also with testing we can have documentation that allows for extra time, etc. on testing. So when your person is saying learning difficulties, you might see what legal protections that could give you. 

 

Do you have any history of learning disabilities? Do you feel the difficulty is from the physical challenge of the NF, or does your family, though very bright, have a tendency toward some learning disabilities anyway? Just thinking things could compound. And even if they called it say SLD Reading, when you do brain scans it might be that her brain pattern is not so much dyslexic as more NF, whatever that would look like. Or maybe not, maybe both? I don't know. 

 

I just keep trying to think here how this plays out. You know what the interventions are for dyslexia and phonological processing problems. But to dig in with her NF brain and go THIS is what is holding her back, this particular aspect. Then you would know what you're trying to work around. It could be a mix of things. Just trying to think with you here.

 

Have you ever done the Barton test or had a CTOPP or some other test of phonological processing? It's always helpful when you can exclude things and go ok that is NOT the issue or not part of the problem or the solution.



#13 Storygirl

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Posted 07 January 2018 - 11:31 AM

I have a bit of knowledge about NF. From what I understand, it is primarily a tumor disorder. I don't know if I'm phrasing this well enough. I don't want to say that NF itself does not affect learning. But according to the article the OP linked, 50% of people with NF have learning issues and 50% do not. To address the learning issues, it's not a matter of doing something specific that is only for people with NF. You would use the techniques and accommodations that would help anyone who has dyslexia, etc.

 

Right? OP, feel free to correct me if this is wrong. My research into NF was twenty years ago, so I'm sure there have been advancements in understanding since then.

 

It sounds like you are getting some good help from the neurologist. But I really think you would be better able to help with the learning disabilities if you had a full report and were able to know exactly what to address. For example, if it is dyslexia, you would know to use materials meant for dyslexia, such as Barton.

 

https://nfcenter.wus...ntion-deficits/ It's interesting to me, because this description of learning issues sounds almost exactly like Nonverbal Learning Disorder (which one of my kids has). There are specific things that people can do to help kids with these kind of symptoms.

 

I don't know anything about NY laws, but I wonder if getting an IEP through the schools would serve a purpose for you. Documenting the LDs, either through the school or through a neuropsych (or both -- we did both) may help you figure out what to do about those standardized testing requirements. Because the schools do have to have a way to manage the testing for their kids with LDs, and really as a homeschooler, I think your child would deserve those same accommodations.

 

When we talked to the public school about my child not being able to pass standardized tests required for high school graduation in our state, for example, we were told that students with disabilities can receive an exemption from passing. So they can still graduate, even if they can't pass the required tests. (Now, homeschoolers in our state do not have to pass those tests, but my son will be enrolled in school, so it something that we asked. This is just an example of how students with LDs can get special accommodations.)


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#14 Storygirl

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Posted 07 January 2018 - 12:37 PM

https://www.nfauk.or...isabilities.pdf

 

This looks a very good article. OP, you very well may have seen this already, since it popped up for me during my internet search. So much good information in there about learning disabilities found along with NF and ways to help. Note that this article does also recommend neuropsych evaluations, to determine each individual's specific learning needs.


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#15 kbutton

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Posted 07 January 2018 - 03:01 PM

I don't think she does, nobody has ever called it that way.  The neurologist talks about learning difficulties.  I normally give her short breaks when the headaches start.  She can sometimes go for days without them and then she has a day when she complains it all day long.  During those days, I just let her do what she wants.   

 

Do you see a child-life specialist that can maybe give you additional strategies for headache days? I have a kiddo with a genetic disorder, and he has lots of aches and pains. It can be difficult, but we never lose a whole day. A lot of children's hospitals have child-life specialists that you can consult.

 

I would also consider OT/PT or some kind of massage or something--whatever might be appropriate for NF1. That kind of stuff is making a big difference for my son.

 

BTW, I had a relative by marriage with neurofibromatosis. I rarely hear anyone talk about the disorder, so it always makes me think of him fondly when I hear about it (he has passed on). 



#16 pmeilaen

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Posted 07 January 2018 - 03:04 PM

Where we live (Ohio, the US), the homeschooling laws allow kids to do alternate assessments. So they can have a portfolio review and the person certifies they are "performing at ability level." Also with testing we can have documentation that allows for extra time, etc. on testing. So when your person is saying learning difficulties, you might see what legal protections that could give you. 

 

Do you have any history of learning disabilities? Do you feel the difficulty is from the physical challenge of the NF, or does your family, though very bright, have a tendency toward some learning disabilities anyway? Just thinking things could compound. And even if they called it say SLD Reading, when you do brain scans it might be that her brain pattern is not so much dyslexic as more NF, whatever that would look like. Or maybe not, maybe both? I don't know. 

 

I just keep trying to think here how this plays out. You know what the interventions are for dyslexia and phonological processing problems. But to dig in with her NF brain and go THIS is what is holding her back, this particular aspect. Then you would know what you're trying to work around. It could be a mix of things. Just trying to think with you here.

 

Have you ever done the Barton test or had a CTOPP or some other test of phonological processing? It's always helpful when you can exclude things and go ok that is NOT the issue or not part of the problem or the solution.

 

We have to do standardized testing every other year, starting grade 4 or 5.  In high school, we have to do it every year.   There is no way around it as far as I know (I have talked to some other mothers with children with Down's syndrome).  The easiest way to avoid this is to keep your child at a certain grade level below grade 4.  

 

The learning difficulties are just part of the diagnosis with  NF 1.  Here is a brochure about it.  None of my other children has similar problems, but of course, you could have these problems without having NF 1.  I think we will just work with her as well as we can and see what she has accomplished by the end of this year.  This will give us some time to decide to let her redo grade 3 or let her move on.      



#17 pmeilaen

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Posted 07 January 2018 - 03:09 PM

Do you see a child-life specialist that can maybe give you additional strategies for headache days? I have a kiddo with a genetic disorder, and he has lots of aches and pains. It can be difficult, but we never lose a whole day. A lot of children's hospitals have child-life specialists that you can consult.

 

I would also consider OT/PT or some kind of massage or something--whatever might be appropriate for NF1. That kind of stuff is making a big difference for my son.

 

BTW, I had a relative by marriage with neurofibromatosis. I rarely hear anyone talk about the disorder, so it always makes me think of him fondly when I hear about it (he has passed on). 

 

Yes, we do see a specialist and she has given us some ideas, especially that painkillers do not work for these children.  Nobody has ever mentioned massage, but we give her lots of physical cuddle time.  Maybe I will ask during our next check-up with the specialist if massage would be helpful.  Thanks for mentioning it.  I am sorry to hear that your relative has passed away, but it is also nice to hear that there are other people out there with the same condition!  



#18 pmeilaen

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Posted 07 January 2018 - 03:16 PM

https://www.nfauk.or...isabilities.pdf

 

This looks a very good article. OP, you very well may have seen this already, since it popped up for me during my internet search. So much good information in there about learning disabilities found along with NF and ways to help. Note that this article does also recommend neuropsych evaluations, to determine each individual's specific learning needs.

 

I just linked to this brochure myself.  It is very informative and has great ideas.  Thanks so much for posting it.  We live very far from all specialists, about 2 hours one way.  Also, our insurance has a very high deductible so that anything "extra" is basically impossible for us right now.   



#19 PeterPan

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Posted 07 January 2018 - 03:28 PM

We have to do standardized testing every other year, starting grade 4 or 5.  In high school, we have to do it every year.   There is no way around it as far as I know (I have talked to some other mothers with children with Down's syndrome).  The easiest way to avoid this is to keep your child at a certain grade level below grade 4.  

 

The learning difficulties are just part of the diagnosis with  NF 1.  Here is a brochure about it.  None of my other children has similar problems, but of course, you could have these problems without having NF 1.  I think we will just work with her as well as we can and see what she has accomplished by the end of this year.  This will give us some time to decide to let her redo grade 3 or let her move on.      

 

In our country all students, irrespective of where they school (home, charter, ps, whatever), have the federal, legal right to evaluations through the public schools. Not every state requires the ps to write an IEP, but they at least have the right to evals. Then, if you get an IEP written, the IEP (individualized education plan) is your documentation that can be kind of cover your butt. Does your country have something like that, some legal document to protect you? It sounds like you're already doing all you can. It just seems kind of antagonistic for the government not to have a plan for how kids with significant disabilities are handled. Our states have laws for that, so your ability to comply with homeschooling laws includes what to do if your dc has disabilities. 

 

I went and read that brochure. It seems kind of a downer, sigh. It's almost as if it's saying not only will the crunchiness of the nerves affect learning, but it may be atypical or HARDER than for a typical SLD dc or resist traditional interventions. I don't know, just saying it was kind of discouraging to read. It seems like on some of these kids the gap grows as they age, or you can imagine that it could.

 

Has she had OT and SLP evals? I'm losing track of everything here. I would encourage you to do that, even though she has a strong vocabulary. My ds has a 99th percentile vocabulary but had language delays. You don't find them till you do the testing. It would just be something to check. 

 

If auditory is good for her, is she getting access to audiobooks? My ds listens to a lot of audiobooks. You can even get Great Courses through Audible. :D

 

There are CBT techniques for pain. One is to do a body scan, identify the location of the pain, and do some breathing exercises. You can sometimes get a 30% reduction in pain using this. If you can find a child psych who does CBT, might be a good idea. It all sounds kinda weird, but I use it myself. If she's going to have recurrent pain, she might need layers of strategies. 



#20 pmeilaen

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Posted 07 January 2018 - 03:39 PM

I have a bit of knowledge about NF. From what I understand, it is primarily a tumor disorder. I don't know if I'm phrasing this well enough. I don't want to say that NF itself does not affect learning. But according to the article the OP linked, 50% of people with NF have learning issues and 50% do not. To address the learning issues, it's not a matter of doing something specific that is only for people with NF. You would use the techniques and accommodations that would help anyone who has dyslexia, etc.

 

Right? OP, feel free to correct me if this is wrong. My research into NF was twenty years ago, so I'm sure there have been advancements in understanding since then.

 

It sounds like you are getting some good help from the neurologist. But I really think you would be better able to help with the learning disabilities if you had a full report and were able to know exactly what to address. For example, if it is dyslexia, you would know to use materials meant for dyslexia, such as Barton.

 

https://nfcenter.wus...ntion-deficits/ It's interesting to me, because this description of learning issues sounds almost exactly like Nonverbal Learning Disorder (which one of my kids has). There are specific things that people can do to help kids with these kind of symptoms.

 

I don't know anything about NY laws, but I wonder if getting an IEP through the schools would serve a purpose for you. Documenting the LDs, either through the school or through a neuropsych (or both -- we did both) may help you figure out what to do about those standardized testing requirements. Because the schools do have to have a way to manage the testing for their kids with LDs, and really as a homeschooler, I think your child would deserve those same accommodations.

 

When we talked to the public school about my child not being able to pass standardized tests required for high school graduation in our state, for example, we were told that students with disabilities can receive an exemption from passing. So they can still graduate, even if they can't pass the required tests. (Now, homeschoolers in our state do not have to pass those tests, but my son will be enrolled in school, so it something that we asked. This is just an example of how students with LDs can get special accommodations.)

 

Here is a link to a more detailed brochure about the learning difficulties.   I think that NF 1 is more than "just" a tumor disorder because you may develop them or not.  You might just have bone deformities or the brown spots.  Or you may basically have no symptoms at all.  Most homeschoolers here do not recommend an IEP and simply hold their children back.  It is too complicated to go into the details about that, it has something to do with the local schools. 

 

But you are correct about how to address the learning difficulties, you have to look at things like dyslexia, dyscalculia, etc., and go from there.  I looked up Nonverbal Learning Disorder, but did not think it sounded like my child.  She is our "actress" and is very aware of facial expressions and what they mean.  She performs on stage (with ballet) regularly and does very well.  



#21 pmeilaen

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Posted 07 January 2018 - 04:10 PM

In our country all students, irrespective of where they school (home, charter, ps, whatever), have the federal, legal right to evaluations through the public schools. Not every state requires the ps to write an IEP, but they at least have the right to evals. Then, if you get an IEP written, the IEP (individualized education plan) is your documentation that can be kind of cover your butt. Does your country have something like that, some legal document to protect you? It sounds like you're already doing all you can. It just seems kind of antagonistic for the government not to have a plan for how kids with significant disabilities are handled. Our states have laws for that, so your ability to comply with homeschooling laws includes what to do if your dc has disabilities. 

 

I went and read that brochure. It seems kind of a downer, sigh. It's almost as if it's saying not only will the crunchiness of the nerves affect learning, but it may be atypical or HARDER than for a typical SLD dc or resist traditional interventions. I don't know, just saying it was kind of discouraging to read. It seems like on some of these kids the gap grows as they age, or you can imagine that it could.

 

Has she had OT and SLP evals? I'm losing track of everything here. I would encourage you to do that, even though she has a strong vocabulary. My ds has a 99th percentile vocabulary but had language delays. You don't find them till you do the testing. It would just be something to check. 

 

If auditory is good for her, is she getting access to audiobooks? My ds listens to a lot of audiobooks. You can even get Great Courses through Audible. :D

 

There are CBT techniques for pain. One is to do a body scan, identify the location of the pain, and do some breathing exercises. You can sometimes get a 30% reduction in pain using this. If you can find a child psych who does CBT, might be a good idea. It all sounds kinda weird, but I use it myself. If she's going to have recurrent pain, she might need layers of strategies. 

 

I am in the US (at least most of the time).   :)   I know about IEP's, but in our homeschool circles here, mothers try to avoid them, even for children with severe disorders.  I do not want to go into details why that is so.  Families simply hold their children back and keep them at a certain grade level.    

 

The brochure is very detailed and it can make you feel very depressed, but I also found it eye-opening, especially because we did not know what was wrong with my daughter once she started more academic work (before the diagnosis).  She does not show all possible symptoms and our neurologist thought some learning style evaluations would be good, but not other ones.  I have to add that she does not know much about homeschooling.  So far, we are only using audiobooks from our library.  We can also download them.  Once she gets older, Audible sounds perfect for her.    

 

We are not doing any scans right now because we cannot afford them.  They would be mandatory of course, if there were signs of tumors, but there are none so far and our pediatrician also did not recommend them at this point.        



#22 Storygirl

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Posted 07 January 2018 - 06:45 PM

Just to clarify my comment about NVLD. It was not that I thought you should consider NVLD as a diagnosis, but that the description that was in that link reminded me of NVLD, because of the visual spatial problems.

 

I don't know the homeschool laws in your state, but it sounds like they are more difficult to navigate than those where we live. That would be frustrating.

 

To me, the tricky thing about grade adjustment to meet the minimum requirements for passing the testing is that you can only do that once, so as the child ages, if they don't make what is deemed to be acceptable progress, the dilemma will rear its head again. I think if the student is able to make a year's progress during each school year, stepping back a grade level on paper could be a good plan. I have to admit that I'm looking at that solution from my own perspective with a child whose performance on standardized tests is so poor that changing grade level would still not result in a passing score, which is why our family personally need alternate solutions (DS13 is already old for his grade anyway, having started K at age 6).

 

I hope the grade switch is an adequate solution for your testing dilemma. You may have looked into this already, but you might see if you can get some documentation that your daughter needs accommodations for testing. My kids have accommodations such as extra time, use of calculator, test read aloud to them, and testing in a quiet room. You may be able to get documentation that these are needed without going through the school for an IEP, but you'd have to look into what your state allows and requires.

 

 

 

 



#23 Storygirl

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Posted 07 January 2018 - 06:50 PM

I know your hope was to find support from other parents dealing with NF. New people join the LC board all the time, so if you stick around, you might eventually find someone like that. In the meantime, I hope you stick around, because many of the academic learning issues you are dealing with are things that others here have dealt with (reading, math, and memory issues), and people may be able to offer support in those areas. :)

 

More people read the general LC board than the Special Needs section of the LC board, so if you'd like a wider response, feel free to post questions there as well.



#24 kbutton

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Posted 07 January 2018 - 07:03 PM

NY is a very hard state to get around with their diplomas and testing. Very hard. There are a number of people on the WTM boards in general who are in NY and might offer you some additional information that goes beyond what you are hearing locally. Or, they might know of some state-specific resources that haven't been mentioned to you.

 

 


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#25 pmeilaen

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Posted 07 January 2018 - 07:27 PM

Just to clarify my comment about NVLD. It was not that I thought you should consider NVLD as a diagnosis, but that the description that was in that link reminded me of NVLD, because of the visual spatial problems.

 

I don't know the homeschool laws in your state, but it sounds like they are more difficult to navigate than those where we live. That would be frustrating.

 

To me, the tricky thing about grade adjustment to meet the minimum requirements for passing the testing is that you can only do that once, so as the child ages, if they don't make what is deemed to be acceptable progress, the dilemma will rear its head again. I think if the student is able to make a year's progress during each school year, stepping back a grade level on paper could be a good plan. I have to admit that I'm looking at that solution from my own perspective with a child whose performance on standardized tests is so poor that changing grade level would still not result in a passing score, which is why our family personally need alternate solutions (DS13 is already old for his grade anyway, having started K at age 6).

 

I hope the grade switch is an adequate solution for your testing dilemma. You may have looked into this already, but you might see if you can get some documentation that your daughter needs accommodations for testing. My kids have accommodations such as extra time, use of calculator, test read aloud to them, and testing in a quiet room. You may be able to get documentation that these are needed without going through the school for an IEP, but you'd have to look into what your state allows and requires.

 

I just looked briefly at NVLD when you posted about it and thought it sounded very different, but did not think you meant it as a diagnosis.  I did not see many similarities when looking briefly, but maybe I am wrong.  This is a new world for me and I am a complete novice.  I am glad you posted about it so I can learn more  :) .  

 

We are in NY and our laws are supposedly the toughest.  I guess it is possible to keep your child at a certain grade level here for a longer time, because homeschooling families I know are doing it (I know a 6th grader who is still in kindergarten on paper), but I think those have an IEP in place.  I guess you are right that without one you could only do it once, maybe twice.  So far my local fellow moms' advice has been to see how she is doing by the end of the year and then to re-evaluate.  You cannot get around the testing, though, once your child is officially in grade 5.  But you only have to be above 33 % I believe.  We can test our children at home!  That is one good part about it.   

 

Like you, most of my children did not start school (either K or First Grade) until they were 6.  That was done due to philosophical reasons, though. I am actually from Germany and children there do not start school early.  Some won't even start until they are 7.  Kindergarten has nothing to do with school in Germany, is not mandatory, and not academic at all.  You do not learn to read or write or anything else that is formal learning until you start first grade.           

 

Thanks so much for thinking this through with me.  


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#26 PeterPan

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Posted 07 January 2018 - 07:40 PM

Oh dear, you're in NY. :(

 

Come to Ohio and you would get the state disability scholarship, evals, etc. She'd get $10k a year with the state scholarship once you got her an IEP. Just cross the border and come to the promised land...

 

Sounds like you have a plan for now. The issue is if she falls behind passing, even with the grade adjustments, sigh. 



#27 pmeilaen

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Posted 07 January 2018 - 10:02 PM

Oh dear, you're in NY. :(

 

Come to Ohio and you would get the state disability scholarship, evals, etc. She'd get $10k a year with the state scholarship once you got her an IEP. Just cross the border and come to the promised land...

 

Sounds like you have a plan for now. The issue is if she falls behind passing, even with the grade adjustments, sigh. 

 

NY is lovely, but all the paperwork for homeschooling is a burden.  My sister-in-law homeschools in Ohio!  My husband grew up there.  

 

Yes, I will keep my fingers crossed that she will get to where she is supposed to be.  


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#28 pmeilaen

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Posted 07 January 2018 - 10:35 PM

NY is a very hard state to get around with their diplomas and testing. Very hard. There are a number of people on the WTM boards in general who are in NY and might offer you some additional information that goes beyond what you are hearing locally. Or, they might know of some state-specific resources that haven't been mentioned to you.

 

I will keep that in mind, I do belong to two different homeschool groups, one is up in Buffalo.  I have not asked anybody there because we rarely do things with that group, it is too far.  But I should maybe mention it.  



#29 pmeilaen

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Posted 07 January 2018 - 10:40 PM

I know your hope was to find support from other parents dealing with NF. New people join the LC board all the time, so if you stick around, you might eventually find someone like that. In the meantime, I hope you stick around, because many of the academic learning issues you are dealing with are things that others here have dealt with (reading, math, and memory issues), and people may be able to offer support in those areas. :)

 

More people read the general LC board than the Special Needs section of the LC board, so if you'd like a wider response, feel free to post questions there as well.

 

I always check the boards here, I like to get new ideas  :)!  So I will check back here regularly.  I will also look for ideas on the general LC board, and indeed, have done so already.  My daughter has made good progress with the new materials we are using, in fact, my son, who is home from college for Christmas, was really impressed with how much more his little sister could do in math and reading.  So something must be working.  Thanks again for everybody's ideas and support.     


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#30 kbutton

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Posted 08 January 2018 - 02:19 PM

I will keep that in mind, I do belong to two different homeschool groups, one is up in Buffalo.  I have not asked anybody there because we rarely do things with that group, it is too far.  But I should maybe mention it.  

 

Some groups are diverse and in some groups, everyone does similar things. Then everyone's personal experience can be different, so they know different things. I always say it never hurts to ask more questions. 



#31 pmeilaen

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Posted 08 January 2018 - 02:42 PM

Some groups are diverse and in some groups, everyone does similar things. Then everyone's personal experience can be different, so they know different things. I always say it never hurts to ask more questions. 

 

So true!



#32 Sarah J.

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Posted 08 January 2018 - 09:33 PM

Just a thought about the headaches. Sometimes cold can help. Some companies make chilled caps that might prevent or help control headaches. Like this:

 

https://www.icekap.c...es/testimonials

 

The other thing I might look at is light. Some people are sensitive to particular kinds of lighting, like fluorescent light, that can be a headache trigger. Perhaps try turning off artificial light and using a mirror to get more natural light, or moving closer to the window. These may or may not help, but they would be the first things I would try if my child got many headaches. Also, if eyestrain could be a culprit, maybe a magnifier for reading, or larger print sizes.



#33 pmeilaen

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Posted 10 January 2018 - 11:14 PM

Just a thought about the headaches. Sometimes cold can help. Some companies make chilled caps that might prevent or help control headaches. Like this:

 

https://www.icekap.c...es/testimonials

 

The other thing I might look at is light. Some people are sensitive to particular kinds of lighting, like fluorescent light, that can be a headache trigger. Perhaps try turning off artificial light and using a mirror to get more natural light, or moving closer to the window. These may or may not help, but they would be the first things I would try if my child got many headaches. Also, if eyestrain could be a culprit, maybe a magnifier for reading, or larger print sizes.

 

Thanks so much about this new information.  I have never heard of those caps.  We do have a lot of natural light and not much fluorescent light.  It really helps to give her frequent breaks, then the headaches disappear quite fast (although some days are just "headache" days).