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What would you focus on education wise if...(sad post)


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I will share some of the info but not all.

 

As you all know my little boy has been ill for a while. We are finally getting some of the results in. He has one of the Hyper IgE sindromes or even a combo.

 

He is 11 and has only know started to read.He can read readers Level 4 but I have caught him reading his sister Apologia General Science book the parts that interest him. He is very ill with an extremely rare auto imune disease. I will not disclose all the details but these are what we are facing now:

 

According to his tests in less than a year his counts became 6x higher (these should have double or trippled - that was the worst case scenario a year ago).

 

The treatment options are limited. Most of them unproven.

 

Today we had to stop and rush to get tests done and are waiting to hear if we have to rush him into hospital because he has organ failure. He can look alright, jump n skip but his little body is dieing inside.

 

But let me not regress. His prognosis has changed from 40-50 years, to lasting maybe until 25-30 and now the doctors say that if he does not enter in remission or if we can not get him into the clinical trials it may only be 2-5 years (life expectancy).

 

As a homeschooler what would you focus on teaching him curriculum wise. Reading, Math, Child Lead. We have decided that if he can not be entered in the trials as his parents (this is a personal choice) we opt for quality of life vs. life expectancy. We will endevour the best within reason but we will not imprison him in a clinical enviourment to move the 2-5 to a 5-10 years.

 

Also due to oportunistic infections even sending my daughter to school is not a option. At the moment I do not want to push academics I want her to enjoy an build memories with her brother. The two of them learning an exploring together. Yes, that might mean that she graduates late but we as a family need to build memories that will last a lifetime.

 

It is hard I am a box ticker and make the kids work hard but in view of the above this has changed...

 

PLEASE HELP. What would you do under these circumstances?

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Many thoughts and hugs. :grouphug: Honestly, I'd throw out the box and be a family.

 

For academics, I would do some math, reading, and have any content subject be interest led. I would do nature studies if he can be outside. If not keep the wonder of the world through documentaries, etc.

 

I don't know how old your dd is, but I would set aside some time for her to continue skills building subjects, writing, math, reading, and let her join in the content subjects with your ds. I would try to carve out some time for "normal" for her.

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:grouphug: :grouphug: :grouphug: Praying for your family.

 

In terms of schooling, I would try to work on strengthening his reading. Even if he really only does have a few years left, being a good reader will allow him to escape his physical limitations through books. A lot of content subjects can be done through books, even math. If a miracle comes through and medicine does change his prognosis, then being a strong reader would give him the tools to catch up later.

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Oh, no. My heart just breaks for you. I truly admire your strength for your kids, and how you're trying to make the next years count in every possible way. :grouphug: I'd say it's all about family time and building memories. Totally interest-led learning, and reading. Crimson Wife is right--reading will allow him to experience life wherever he's at during the next few years.

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There are no words to say how sorry I am. I have had three cousins lose children unexpectedly over the last few years, and the worst part has been the "what I would have done differently if I had known the time was so short." I am glad for you to have a chance to plan. I would do lots of read aloud with both of them. I agree with everything that was said about reading, but the best thing about reading is that you can build a rich inner life. This is probably more important for a boy who will spend the last time of his life fairly withdrawn from society. It will also give him mental tools deal with his pain.

 

Also, I would do a LOT of art. Art is therapy, it will also give him tools to express his emotions and your dd will need the tools to express her emotions too. And, you will have his finished projects, things he has created, to have when he is gone. I would do pottery, clay sculpture, painting, computer graphics, I would try lots of things so that he has a chance to find a medium that he really connects with.

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So sorry.

 

I would do as others have said and go by his interest. Maybe doing fun learning with science experiments, history lessons with history pockets, etc. Fun but educational. I have four children and we do a lot of hands on stuff and they really enjoy it. They get to bond together as brothers and sisters and have fun while learning.

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:grouphug: :grouphug: :grouphug:

Along with building his reading skills as suggested above, I would add in math, using games and manipulatives (anything to keep building his analytical skills) if he doesn't like traditional math books

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:grouphug: I can't even imagine what you're going through.

 

I would allow your son's education to be completely child-led. I would do something a bit more formal and structured with your DD. You don't have to give her a full workload, but at least make sure the basics are covered so she doesn't fall too behind.

 

I'm so very sorry :crying:

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:grouphug: :grouphug: :grouphug: Praying for your family.

 

In terms of schooling, I would try to work on strengthening his reading. Even if he really only does have a few years left, being a good reader will allow him to escape his physical limitations through books. A lot of content subjects can be done through books, even math. If a miracle comes through and medicine does change his prognosis, then being a strong reader would give him the tools to catch up later.

 

:grouphug: :grouphug: :grouphug:

 

This is exactly what I was thinking.

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Let him enjoy life and enjoy your time as a family, no matter what. As far as school, I'd do as much as it takes to make him feel "normal". I had a former student who had a degenerative neurological condition and had lost a lot of functioning in a short time. However, she still NEEDED to be in school for her emotional well being-it was something "normal" that she could hang on to and that other kids did. So for her, even though rationally it didn't matter if she ever finished 6th grade math, it was important that she do it. At the same time, though-we also had families who were attending our school because one child was undergoing therapy at St. Jude's-and my principal made it clear that, for those kids, the priority needed to be the family. If the ill child was having a good day and was able to spend the day at the zoo, he wanted the other kids in the family to be able to have that special day. If the ill child was failing and might not recover, he wanted the kids to be able to be there. Even if it meant that they failed the all important state test (and for a PS principal to make that statement was quite strong indeed).

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I am so sorry you have to go through this.

I would focus on reading, because being able to read will open him the door to learning anything he wants - it is the most crucial skill for the future if his prognosis improves, and will also give him joy right now.

Have him learn whatever he wants. If he thrives on a routine that is as normal as possible, give him the routine. If he is too ill to deal with a routine, let schooling be completely unstructured. Let him learn anything that gives him pleasure and a sense of accomplishment.

My thoughts are with you and your family.

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I have nothing to add about what I would focus on because everyone said it so nicely and I agree with them. I'm sorry you were faced with the possibility of time being shorter than you thought. Your family is in my thoughts. I hope they are able to get him into the trials or he goes into remission.

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The only academic I would do is math. After that I would read and read and read. I would do konos and build memories making all those projects. If he surpasses life expectancy the dr's are giving he will have learned enough to carrying on an average adult life. If he only reaches the lower end of life expectancy, you will have a sh!t load of good memories to focus on. Most of us think about these childhood years to be about preparing them for adulthood where they will spend the next 60-80 years,. That is not the case here, my focus would be to make childhood as fun as possible, triple how much love they felt me give(of course we already give tons to our kids, but if I knew that I didn't have another 80 years to show them that I would triple my efforts kwim). I would involve him in the research and decision making in regards to treatments. I would make sure he knew our religious beliefs was baptized etc to ensure I would be with him again (of course that all depends on your own beliefs how you approach that). I would do all I could to ensure a loving relationship between siblings so that daughter doesn't feel guilt about how she treated brother when the time comes (my mom still feels guilty after over 40 years because the last words she said to her brother before he died was "I hate you" because he borrowed a record of hers and it broke so she said those words, and that night he died in a car crash, 40 years later it still haunts her) SO I would do all I could to ensure my daughter never had to live with taht sort of guilt for childish behaviour regardless of expectancy. Lastly, and this has less to do with your son directly, but I would make specific time each week just for dd where the concerns, worries and stress of her brother's illness do not come into play. I would do this because as ds gets sicker it is natural to turn your focus off of the healthy child and put it on the sick child. I wouldn't want the dd to feel that she had to be ill to get attention or to turn her back on the family when his time comes whether in 5 years or 50. To lose 1 child is wrong and a tragedy, to lose both (even if 1 is still living and has simply turned their back) would be unbearable.

 

:grouphug: My prayers will be with your family, and I am so sorry that you even have to think about this stuff. I need to go hold my kids for a little while today and thank God for their relative good health.

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I'm so sorry. If it was me I think we would focus on experiences. Travel, see things and explore. Use what we are experiencing to guide our studies. This way both kids are still learning but memories and time together would be priority.

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So sorry for all of you.

 

I agree with so many of the above posts. Reading, Bible studies (that will be a comfort for all of you), art, nature study, real life experiences (if he can handle crowds), his interests. Also, keep your DD up to date with her studies...maybe plan materials she can take to Dr appointments. I always have my e-reader handy for books in the car. I could see the sibling of an ill child feeling pushed aside, so I'd do my best to avoid those feelings of resentment...maybe plan things that she would enjoy as well. Giving both of them plenty of family time would be a priority.

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I have nothing to add since you've received excellent advice so far. Just enjoy each other during this time. I cannot even imagine. I pray that God will bless the years you all have together. Many, many :grouphug: .

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I'm so sorry your family has to go through this. I can't imagine. I would do child led/unschool and find out what he wants to learn about, what interests him, what he's passionate about, what seems therapeutic for him, and do as much of that as you can. Do things you enjoy as a family to the extent he is able, read to him, be together, find things to laugh about.

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Thanks to all your advice. Your words of wisdom have help validate some of the decisions we were making regarding the kids school. We are in a lot of pain but we are trying to live from minute to minute...

 

My little boy is feeling ok but his recent count is an indication that something is wrong. Either real decline or an oportunistic infection such a pneumonia. Pneumonia is the best case scenario so we are trying to live while waiting for our marching orders to take him into hospital. It is a cruel disease, he feels ok, he is batling to understand why he has to go for all these blood tests... The kids were asking if they could go swim or if they could spray each other with the hoses and I had to explain that he might have a bad flu and we are waiting for the results of yesterday's bloods . He was fighting me says he is ok but I had to explain that he has spy genes and that his sickness act like bad spies, he does not have to feel sick in order to be sick. That is also the reason for all the bloods.

 

They were outside trying to build a tree house and they tied a piece of rope to a pillar an are skipping. They were reading some Sonlight books and wants to build and dressed up as make belief tribe and they are building their own village. They are also collecting clothes to make old fashioned clothes for the missionaries. I have to get my camera. We need to use the camera more.

 

They have not finished the village say they will continue tomorrow and they have collected a bunch of materials and are quietly painting outside. I sit on the front sun room (enclosed porch) and look out whilst trying to fight the tears. There are so many arrangements needed to be done. So many plans but all I want to do is be still and savour this moment.

 

My husband organized a helper and his moving the furniture around. We have donated our spare room furniture to a family in need. These people are strugling financially and the husbands father has terminal cancer. They have to move both his parents in and were stressing and strugling because they did not have a bed or a matress for them. We only heard of it on Sunday after we had gotten our diagnosed but decided that we will live as nornal life as possible and let our children see that even during personal hardship there are always ways we can bless others. Him and his helper have packed boxes. Unpacked the bed and furniture, loaded the van and are on their way to deliver it. I guess that is his way to cope but I am so proud of him to jump to help others, I was also helping bu directing agree.gif them to do what I wanted done...

 

I have steeped down from the Wednesay night childrens class and it was hard when I walked in to check on the substitute teacher with the kids huging me and asking me when I would come back. In our small Children's ministry I have fought to kept it alive and at one time or another ended up teaching all the ages because other teachers were unavailable. I love those children, most of them whether in my class or and at one stage or another have been my students . Some of them I started with as babies and they are now 3rd Graders and still my students. But it is hard to be around them. I want to cry and scream and hold them tight. I want to do the same to my children.

 

School is off for a while I declared we are on school holidays. We are mourning and in pain but this to shall pass.

My son started very young talking about baptism and we need to focus on studying more about what the Bible says. He has neuro problems, he was premature and was in NICU, has SPD that makes him very dislexic. I know his reading is behind but mentally an emotionally is at about 8-9 years.

 

Please can you give me your best suggestions for school on the move as cheaply as possible (lots of expensive medical bills ahead) and using technology like tablets and so forth. Please note that we are in South Africa.

 

By the way my daughter is 13 and my son is 11...

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I am soooooo sorry for your situation. You are, like so many other ladies have said, a very brave and strong momma. I will continue to ask the Father for more of both strength and bravery for you.

 

I also have to do many online or easy -to -travel- with material. Here are some things that work for us:

Math Mammoth--has pdf books in topic and grade level

Story of the World-- great CD's for listening to the book and both activity book and text are pdf available

Trail Guide to World Geography-- fun program in pdf--not overly expensive

Apologia Science-- the middle and high school txts are available in disks

Shepherd's software online geography games great for learning places--free

Online library card-- ebooks from a library

Spellingtime.com-- lets you put in a list of words and kids can practice them playing games and take tests online, mostly free but you can pay for more.

Mark Kistler art program --kids think this is fun. Learning how to draw with fun cartooning techniques all online. Homeschool buyers coop had a good deal on this.

I have Mapping the World With Art for next year. It's a cd art/geography program. Sounded interesting, but haven't tried it

 

 

I'm sure other people have other ideas, but these are the ones we have tried and like.

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I have dealt with, or am dealing with some similar situations. I need to think more before writing all that I probably will. If you keep this thread running, hopefully I will keep finding time to keep contributing.

 

You are the center of your children's lives and schooling. First you must take care of you, if you hope to support them. I'm dead serious about this! So even before deciding what THEY need curriculum wise, you STILL need to think about YOUR teaching styles and preferences.

 

For ME--it might be VERY different for YOU--I have found that I am able to weather the peaceful times and the chaos with the ORIGINAL early 1990s Doubleday What Your _ Grader Needs to Know series, grades 1-6. These are the sponge painted covers, not the revised ones with children on the front. These 6 books--I have nice hardcover editions--are my lifeline. I know I can take them along with me into most circumstances, or rebuy them cheaply if need be.

 

Sometimes I supplement a lot; other times I just review and reteach a lot from the same book, or read from several books for the variety. Sometimes I prepare handmade samples of copywork for the students to copy; other times I just read from the books, and we talk about what we just read. The books are very adaptable, as I and my students move through the drama of our lives.

 

I spend a lot of time with copywork from Alpha-phonics, and teach cursive writing very explicitly. I use the Spalding Writing Road to Reading 6th edition letter formation scripts for the lowercase cursive letters. I use the Simply Charlotte Mason Delightful Handwriting ZB hand for the uppercase manuscript. Copywork in cursive soothes my students. Teaching manuscript might be quicker to teach and easier for their peers and families to read, but...I went back to teaching cursive for the brain-healing and soothing benefits.

 

This is a student sample.

 

3edd9415.jpg

 

For math, I keep things very very narrow for our CORE and supplement with living books and activities for the other topics if I have time and there is interest. If you are wanting to know more about a narrow and "good enough" math education, try reading How to Tutor and Simply Charlotte Mason Math to start. My favorite core text to teach from is Arithmetic Made Simple. There are not many problems so I usually use cheap and ultra-portable vintage texts as problem banks, such as Ray's and Strayer-Upton. Any workbooks and worksheet generators will do though. I just like having the little hardcover books handy at all times.

 

I think this is enough to digest for now about curriculum, so I'll stop.

 

I survived what was thought to be a terminal autoimmune disease, and then survived what was thought to be a terminal degenerative muscle disease. I also raised a chronically ill child, and now tutor students with major mental illnesses. :grouphug: You cannot always see the future. It can shock the hell out of you. Live for today as much as possible, without thinking you know the future, because it is entirely unpredictable.

 

I know what it's like to wait for test results. I do! Sometimes being around others living their lives the way they do is torture, isn't it?

 

My life has taken shocking turn after shocking turn, that no one ever could have predicted. Don't give up hope about anything, especially when it comes to diseases the doctors still know so little about.

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Oh, and NOT cheap, but I love it.

 

Stick Figuring through the Bible. I like the new level 1-2 TMs. I don't use any of the student or support materials, or even do all the work suggested in the TM. I just read the Bible aloud, and use folded up paper to draw stick figures in the squares.

 

Read, Draw. That's all that gets done here most of the time. But it's another easy and predictable and soothing activity that has definite educational benefit.

 

The old one volume ebook TMs are much cheaper and what I used before the new revised multi-volume series have started to be published. I've been treating MYSELF to the revised hardcopy volumes as they are published. I really prefer my prep time, but I don't think students have noticed the changes at all.

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Hugs, hugs, and more hugs. So hard.

 

Since you say you would be more comfortable with boxes to check, I would make "school" be reading/writing skills, math, music, art, nature journal, read aloud, free reading, and independent project. I would try to make the skill-based stuff (reading/writing skills, math, music practice) take one or no more than two hours, just doing the next thing, then I would send them out to do their nature journals, and for the rest, I would be less structured and just see what they felt like doing each day. The history and science would be covered in the free reading and independent projects. Your children could choose these. (Sounds like they are involved in a nice one right now.) Think of it this way - your son would be working on skills to learn to escape ill-health in a book, to learn an emotional outlet (art, writing, music) and to keep your daughter company. Your daughter would be working on skills for her future and because she, too, needs the escape reading will provide and the emotional outlet of writing, music, and art. Nature journals would help them learn about their immediate world and independent projects and reading would help them learn about the outside world. Doing some skills work will keep you from feeling guilty about your daughter. I have done something very like this at times. One nice thing is that it is pretty portable. You can put the books in a bag along with clipboards and paper and pencils and do school where ever you are.

 

More specifically:

 

For the skills part of the day I would include:

 

For reading/writing skills, I would try to get some sort of workbooks. Remedia Publishing makes them for reading comprehension, paragraph writing, editing, outlining, etc. So does Evan Moor Educational Publishers. That way your daughter could work on them every day semi-independently if you were busy with your son for some reason. Also, it will be easy for them to sit down together and work on them while you float around and just help. Not perfect, but low-energy output for you and satisfactory box-checking-wise. Here is an example: http://www.rempub.co...&product_id=983

 

For math, I would work on whatever program is working for you now. If your son hates it, I wouldn't bother for him. If it turns out that you can't do it with your daughter, I would look for an independent program that is written to the student. Rainbow Resources used to have a number of these.

 

For music, I would try to get them some sort of musical instrument lessons. If that doesn't work, I would work on recorder and sing lots of songs together. They make beginning recorder books that come with a recorder and instructions. It would take about ten minutes a day to learn.

 

I would do Draw Squad. This is a workbook like drawing program that teaches children (and adults lol) to draw castles and other things. It teaches drawing something you imagine rather than drawing something that you are looking at. It is more fun for children that way. This is another ten or fifteen minute activity that has amazing results and keeps children from becoming frustrated with art because they are disastisfied with their drawing ability. Here is the book: http://www.amazon.co...r/dp/0671656945 And here is the program (you can buy videos, too): http://drawsquad.com/

 

The rest of the day:

 

As a break from the skills, I would send the children out to do their nature journals. We bought notebooks that were half sketchpad, half lined paper like this: http://www.dickblick...ckTracking=true (We bought the smaller size.) I had them draw something outside (a mushroom or bird or something) and write the date, time, weather, and at least three sentences about it (what did it look like, what was it doing, where was it, etc.), When they came back in, they could try to identify it by looking it up on the internet or in a nature guide and add the common name and the Latin name. That was an opportunity to learn something more about it, too. Sometimes we skipped the looking-up part.

 

For independent reading, I would have everyone pick a few non-fiction and a fiction book from the library and read some of each every day. If this is proving hard for them, I'd set a timer.

 

For indpendent project, I would offer art projects (lots of art projects is a great idea) or crafts or let them think up science projects, or just leave them to play "history". Whatever they want goes. The label "independent project" is just for you, a label you can use to check the history/science output box. It isn't anything formal, just a way of giving their play and projects an educational label. : )

 

For reading aloud, I would try to have a book that appealed to everyone, some really absorbing, not-to-be-missed, children's classic that I read to them whenever we all felt like it. It should be something that makes a nice break for you all, something that can be done while you are waiting for something like a medical appointment, something you can do to make a nice bedtime routine, something you can grab to fill small blank spots in the day or for days when nobody feels well enough to do anything else. It counts as literature. Maybe you would like to read Sherlock Holmes stories.

 

If you find you have extra energy and time, then you can add in a science program of some sort. Or you can just have your daughter do one, if you are worried about her education. I found that mine managed to learn a ton from reading science books and doing nature journals because the reading and journals gave them ideas for things they wanted to try. They managed to aquire a good amount of basic science knowledge by reading, even if it wasn't exactly aquired in an organized way.

 

Best of luck,

Nan

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You have described my worst fear. :grouphug:

 

My DS also has a very rare autoimmune disorder. It is still early and even though he is stable and controlled with medication at any time that could change if it spreads to his kidneys, lungs or heart. I follow my DS's lead. He wants to skate so that is what he does even though he does not compete he does go to practices and enjoys seeing his friend. I bought hated gear so he could be on ice and I let him skate. As for academics he is driven. He wants to learn math, science and how to read so that is what we are doing.

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I agree with the pp. Our oldest DS died 7 years ago. He was severely cognitively impaired, among other things, so schooling for him was never an issue. We didn't at first, but eventually we did try to keep up with dd's schooling, but doing only a little when he was in the hospital. He was in too many times and for too long to ignore it. One of the reasons we hs was so she could be with her brother. She has years of memories with him because she was able to be home with him. After DS died we didn't do school for a few months we just needed to be together.

 

I do want to mention we have a family friend who has an autoimmune disease that's very rare. Less than 10 kids in Texas his age have it. He's one of two that can walk. And he wanted to play football. His parents were very hesitant, but the nuero dr told them to let him because he needs to feel normal. He needs to be watched carefully, but he plays when he feels up to it.

 

So use the time to grow your family together. Make memories and let them show their love. It's not something you can prepare for, but you can look back on the good times and remember that love.

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:grouphug: :grouphug: :grouphug: Praying for your family.

 

In terms of schooling, I would try to work on strengthening his reading. Even if he really only does have a few years left, being a good reader will allow him to escape his physical limitations through books. A lot of content subjects can be done through books, even math. If a miracle comes through and medicine does change his prognosis, then being a strong reader would give him the tools to catch up later.

 

:iagree:

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Thanks you all. I am so sorry about yourchild momtoone, I will be pray for your ds Texas Rachel.. This is also a very rare one, less 1000 worldwide since the 60 when it was first identified. We are preparing our selfd for times of remission and times of flare up and will take each day has it comes. We have some of the resources so I will be looking into using them...

 

All suggestions are appreciated...

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Sandst, I don't want to post too many things at once.

 

Today, I'll write a bit about Draw Write Now. I really like the map drawing lessons and the lessons that focus on the earth's continents and biomes. I scan, crop and print the maps onto the same size paper the students will be drawing on.

 

Here is a modified

technique that is based on using a printed map, for when you want to include states or countries. You don't need block crayons. You can use regular crayons that the lip has been sharpened off.

 

Map drawing is a very soothing activity. I prefer to just focus on drawing continents and landforms and biomes, and why we have seasons. I don't teach country memorization. I focus more on what God made, rather than how man is currently dividing things up.

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Praying for you with tears in my eyes.

 

I would go for delight based learning- take a look at the blog Sew Liberated to see some of her ideas. If he's into art, do art to his heart's content.

 

I agree to keep working on reading.

 

Spend lots of time outdoors if that's compatible with his condition. Even just throwing a blanket under a shady tree where he can relax and read can really boost the spirit compared to being inside. If he can't be outside, bring nature in- seashells to examine with a microscope, etc.

 

I would look to character development as well- read books of boys on adventures, bravery, courage, kindness, love...

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Also... I would work on showing him that learning for the sake of learning is a goal in and of itself. Math is beautiful. Writing a smooth piece of prose or poetry is satisfying. I think ALL homeschoolers could benefit by focusing less on an end-product and more on a process of learning to love learning.

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