Monday, October 3, 2016

Homeschooling Muscular Dystrophy

We have been homeschooling Max for just about two years now. Are you considering homeschooling your child with Muscular Dystrophy?

The first fantastic thing about starting to homeschool was realizing my son doesn't need to wear a school uniform. And he won't lose his coat anymore! LOL We started on December 15, so he was able to get quite comfy in athletic pants and long sleeve pull over shirts. We don't homeschool in our PJ's. Maybe if we're sick, we might do that...but we always get ourselves dressed and have a nice breakfast before starting.

How my son sat in little classroom chairs with slippery seats and no arms rests all day with significant proximal weakness, I have no idea. We use vintage Ethan Allen chairs for Max and I that have nice arms to them. We have seat cushions on them, and sometimes use back cushions too.
We only eat at the table if there is a special homeschool treat, and we use covered cups. We keep all the books we are using in an IKEA storage container on the table. If a drink spills, it won't ruin our lovely curriculum. We use the green Trofast bins like on the top shelf of this picture from IKEA.

Max usually starts his morning with about a 6-10 page story from a reader for his grade level. It is usually a historical, moral, or cultural story. Sometimes it is a fable. He reads that on the couch.
We then go to the table. 
We use pencil grippers or jumbo pens that might have a built in gripper. We do a short cursive exercise while we listen to an audio story.

We do not do cyber school because Max had fatigue issues from public school and we knew we needed to customize his learning and his day. We shop in the spring for his curriculum for the next year. It averages between $200 and $500, depending on what we can buy used. Our style is more traditional learning with hands on activities and field trips. We prefer curriculum designed for homeschoolers.

This year Max started using Teaching Textbooks for Math. It is so awesome. He is really learning and is able to do most of his math work for the program on his computer. Some he does in the oversized workbook that has large spaces for him to write. Due to his hand weakness, he has a lot of trouble writing small.

We then work on Grammar. We go over 2 pages of grammar together with him answering verbally, or using a highlighter to select his answers instead of a pen.

He also reads from his science book daily, and his social studies book daily. He has been studying Egypt since school started. Last year, we did a ton of lapbooking for both subjects, but his OT said it was just too much. We are still doing bits of lapbooking for social studies, but no where near what we used to do. We've just moved onto projects and they are more exciting for him I think. A couple weeks ago we made Canopic jars from paper mache. (of course he happens not to be sitting in the arm chair here, because he moved over for the picture. LOL)

We also do spelling weekly. We do the exercises verbally if at all possible each day to become more familiar with the words. He takes a test on Friday, and he writes the words for that.

For writing exercises, we have begun to use Dragon Voice Recognition Technology. Don't forget you need a headset if you buy the program.

Art we often do mid-week, or on late Sunday afternoons (this year anyway so far) with my Mother - in Law. She has bought us some paints, brushes and canvases recently. I also take the kids to historic sites and we do pastel work open air. Both have been lots of fun. We have also done art classes at the library which are free. Max love the pastels as they glide so nicely. We tried foam grippers on the paint brushes but it didn't work out, so Max just uses regular paint brushes.

For music Max has been taking online piano lessons. We also attend free concerts with our homeschool friends when we can. We also learn new songs each year. Last year we enjoyed learning pioneer tunes.

Gym for this year so far is Horseback Riding therapy. Last year, it was PT and OT which both included yoga. Recess is playing with his sister outside.

He ends his day with reading at least 20 pages from a good book:)

Afternoons are free, or else we're at the library, therapy, a field trip, at our Co-op, with other homeschool friends, or at the doctor.

We also love, love, love field trips, but of course with RYR1 Myopathy we battle fatigue. Last year, Max went on something like 27 field trips! I always feel so thankful when we are on our adventures that Max isn't stuck inside, but gets to do so many exciting things.

When homeschooling Max, I have to always be ready to adapt his work. Sometimes he is absolutely exhausted. I can tell if he slumped more than usual, or if his writing is shakier than ever.

We love that it is very easy to go to Dr. appts. We don't have to report to anyone. We just plan our week accordingly. I absolutely cannot imagine managing his endless Dr. visits with him at regular school.

Max used to get sick quite often during the school year and had endless bouts of bronchitis. He has had VERY few illnesses since homeschooling.

If our area is expecting a snowstorm, we run around and have fun the day before the storm and we don't do much school. We may even go out to eat, out shopping, whatever. When the storm starts, we hunker down and gets loads of work done. 

I also find that I get a lot of use out of our vacuum:). I am messy with all the projects I have the kids do. And Muscular Dsytrophy is messy too, especially with limited hand function. I always give the area under and around the table a quick sweep at the end of the day.


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