Casts and Bathing

This is something we are currently dealing with so thought I would share.

Junior is having serial casting done on both legs. Junior's ankles have gotten very tight so his AFOs are leaving marks and causing discomfort. The serial casting helps correct this without surgery. His ankle is put in the best position possible then a cast is placed on it. The cast is replaced each week until the proper position is obtained.
Casting and bathing don't mix so most days Junior is getting bed baths. He is one of those kids that sweats a great deal at night so though we may get away with a bed bath he still needs a real hair wash. After a lot of mess and trying to come up with a good solution I found this inflatable hair wash basin on Amazon(it is on sale at the moment).
Junior has a short neck and his head doesn't fit as far into the basin as it should but a rolled up towel behind his neck prevents too much mess.
The basin has a drain hole inside. I let the hose hang into a bucket so I don't have to worry about the basin over filling.

AFO Socks

We have struggled with finding appropriate socks for Junior's AFOs for years. A few months ago while at Shriners we were given a pair of AFO Socks. They are just right for under Junior's braces and are very reasonably priced. Ours have been washed several times and are holding up well. The larger pairs are also not getting too stretched out even though we fold them down over his AFOs. They come from Canada so it does take a few weeks to get them but we didn't mind.
Be aware that that the sizes run large. I first ordered the same size as the socks I buy at the store and they were too big(though still work fine if we fold them down over the top of Junior's braces). The ones in the picture below are a child's size 6-7 and fit Junior perfectly.

Junior is still recovering from his recent illness and struggling with asthma. I hope to get back to regular posting in the near future.

Chore Pad App

We use a lot of great apps but occasionally come upon one that we love and really makes a difference for Junior. Apps like Proloquo2go which opened his whole world by allowing him to communicate.
We recently tried an app called Chore Pad. When I first checked it out I thought it was neat but didn't really see it as something that would work for Junior.
Chore pad allows you to place a list of chores/activities on a chart. As the child accomplishes each task they can check them off and get a star. You can set it up with a list of "prizes" for a specific amount of stars.
I decided to try placing Junior's daily activities on the chart. The things that are not favorites and he generally is not happy about. This kid HATES to have his teeth brushed and face washed and every morning it is a battle. Those things went on his chart. We ended up with a list of about 10 - 15 things. I then showed it to Junior and explained it to him. To get a star he had to do the activity without complaint.
We started using Chore Pad on Friday morning and for the first time in a very long time I got absolutely no complaint when it came time to brush his teeth and wash his face. Junior didn't whine or try to get out of the hard stuff during exercise time and didn't even cry when it was time for his cough assist. He absolutely loved having me help him check off each activity and seeing the stars add up. He now has 50 stars and gets to get an icee next time we are out(even though he only gets tiny tastes he loves icees).
The positive reinforcement for good behavior and giving Junior control of whether or not he earns the stars seems to be just the right fit. I love it.

Experiencing Life Differently - Digging for Worms and Fishing for Words, In Action

Today during the science portion of Junior's school we learned about worms. Since our unit is about camping we talked about how you use worms to catch fish.
After learning about worms we of course had to dig for some so we could go fishing.

Oreos make the perfect "dirt" so I crushed some and put them in a tub.
Then added some worms(gummy worms)
Am I supposed to look at the worm or take a bite?
Telling me "NO" when I asked if he wanted to taste a worm
asking for help because he wanted to keep digging for worms.
Back on this post I shared one of the ways we were going to use our fishing to work on reading.
Today Junior had a chance to try out "fishing for words".
We went to the boards on his ipad which have all the words we are working on. Then went fishing.
I caught a fish
What picture is on the back(or as I told Junior, what clue is on the back of the fish)
The look I get when I ask him to give me the answer again so I can get a picture(come on I already answered you)
The angle isn't great so the pics aren't clearly showing what he is looking at but if you are here with him it is easy to tell. In this one he is looking at the word make.
Today I was reminded to not underestimate Junior. I used some words on his fish that we have never worked on. The word that really floored me was when he caught the picture for "friend". I asked him to show me what word went with the clue and I could see him look at each word and then very clearly choose the word "friend". I was so excited and telling him how wonderful he did and poor kid just looked at me like "whats the big deal of course I know the word".

Blenderized Diet

Okay this doesn't really fit under adaptions but it is different from the normal. Especially when it comes to eating through a feeding tube and in our case a J tube. Junior eats through a J-tube meaning his food bypasses his tummy and goes straight into his intestines. Severe reflux and repeated lung infections made the change from a G-tube to a J-tube a necessity. Just over two weeks ago we changed to a blenderized diet. Now instead of formula he is getting many different foods through his tube. We have to blend and strain the food to a point where it can run through his feeding pump. This is a challenge but very worth it to know he is getting a healthy diet.

Here is a post I did on his regular blog to update how things are going after 2 weeks on the blended diet. If you go to Junior's blog and look through past posts I talk about how we started it and more detail about the whole process.

Junior has just passed the 2 week mark completely on the blenderized diet.
Prior to that we had been introducing some foods but they were just being added to his formula or given at a different time.
I keep a running list of foods that we know he can eat(with dates they were started), and another with those we will be introducing in the future. We add a new food about every 3 days. This allows me to be able to tell if he has a food allergy and to what.

Junior is doing well with the new diet and those tummy pains that had become a daily part of life are now a rarity. Amazing that not too long ago I was getting ready to talk to his GI because I thought his h-pylori had returned. He was having so many episodes of stomach pain and cramps. Within a few days of removing his formula those episodes stopped.

We are now holding our breath because it looks like he has fought through last weeks virus without things getting too bad. A very big step and, in this house, something to cheer about.

Just over 2 weeks ago this was Junior's diet, what he ate every single day.
Now this is just a sample of what he gets. Food beautiful food.
These little containers hold carrots(top row), sweet potatoes(bottom row), and yellow squash all ready to be frozen.
Some already frozen veggies cubes. Egg plant, beets, and Kale.
Some of the beans and grains we are using.
4 oz frozen cubes of barley, quinoa, rice, lentils, and veggie soup(the two large containers)
A few of the other foods we use. The juices and "milks" are for thinning the food. Almond butter and sunflower butter are great sources of protein since that is the area we struggle with. Olive oil provides the necessary healthy oil/fats)
Those are just a few of the many foods he now gets(or will be getting, some I have ready in the freezer but have not yet introduced them to him). I don't think I showed any fruits but he gets plenty. Right now most are fresh since it is summer time.

I love opening my freezer and seeing all the food cubes waiting. Knowing that Junior is getting a healthy diet is such a wonderful feeling.
Now to get a heavy duty blender to make this all much simpler and less time consuming.

Sick

Sorry for the lack of posts. Junior's school activities had to come to a halt much of this past week because he wasn't feeling well(we did get out for a visit to the Aerospace Museum early in the week). Thursday a seizure hit which meant a trip to the doctors to rule out possible illnesses and get bloodwork. This evening Junior is still a big groggy but feeling much better so hopefully Monday we can get back to his school activities and will be sure to share what we are doing.

I will be doing a series of posts on equipment(items) we "can't live without"(or maybe I should say makes life easier for you and your differently abled child). I would love to hear what it is "you can't live without" along with a picture so I can share it here on the blog. It may be a piece of medical equipment, a chair, toy, etc. As an example our lift is something we can't live without which makes life so much easier, on the technology side Junior's ipad is something that has changed his life.

More Smores Reading

We got the idea for this game from Amanda over at her fabulous blog "A Special Kind of Class"
Be sure to click on over and check out all her ideas.

This game has marshmallow cutouts with a word on each one. To play it the intended way the marshmallow cards are laid out face up on a table. Under one of the cards there is a chocolate shape that says "you win". The child says a little rhyme and then says the word on the card and picks up that marshmallow. They win by finding the chocolate. Super cute game and I knew Junior would love it.
For it to work for him we had to make a few adjustments. He can't verbally say the word on the card and can't grab it so we found a way that works for him. I printed, cut out, and laminated the marshmallow cards.
I then added velcro to the back of each card.
Abby helped Junior color a camp fire printout which we then laminated. Velcro was also added to the back of the fire.
I programed all the words which are on the marshmallows into Junior's ipad.
To play the Smores reading game I place the camp fire on our felt board along with two strips of brown felt(these are our marshmallow roasting sticks).
I then pick a marshmallow and say the word to Junior without showing it to him. He has to use his ipad to show me the correct word. If he is correct we place the marshmallow on the roasting stick. To win he has to get 4 words correct and fill up the roasting sticks.

Experiencing Life Differently - Camping (Fishing Pole)

Now that we have our tackle box, worms, and fish we need a fishing pole.
A children's fishing pole with a velcro or magnetic attachment on the line would work. We didn't have one available though so we used the cardboard roll from some wrapping paper. I placed a small hole near one end and put some yarn through it for our fishing line. I tried tying a knot in the yarn but had made my hole too large so even with a huge knot it pulled right out. I then found some black electrical tape and wrapped the end of our pole so the yarn would stay put(also looks cool).
At the end of our yarn we attached a large fishing bobber
I first tried placing a magnet on the bottom to catch our fish but the size magnets we had would not pick up the fish. I then added a piece of velcro to the bottom of the bobber and it worked perfectly.A piece of vlecro was then added to each fish(we used white so it is barely noticeable)
I asked Junior what color he wanted to paint his pole and was told "NO". I think that would be the first time he has ever told me no when it comes to painting. I realized that he knows if he paints it we have to wait on it to dry to be able to use it and I suspect that was why he didn't want it painted.
We wrapped the end in yellow electrical tape so he would have a easy to hold handle and thats it.
We placed the fish on a piece of poster board which was painted blue and were all ready to fish
The fishing line(yarn) is rolled around the pole because it was too long for use while in his chair. We made it long enough for him to also fish in his stander.
My little fisherman

Today it was just fishing for fun since it is the weekend. Tomorrow we will use it during our school session and introduce our learning games with it.

Experiencing Life Differently - Camping (How Many Worms)

How many worms do Junior's hungry fish want?

We are using the fish we made for a reading game but also for a math game as well.

For this game you will need - fish we made in the previous posts, a set of numbers laminated(I should clarify that I do not have machine to laminate so I use clear contact paper) with velcro on the back, worms(I copied several and Junior helped color them) with a number on each one, something to use as a fishing pole with a magnet on the end of the line.
This can of course be adjusted to fit your childs needs. For Junior we use his felt board so everything can be up in front of him.
I place one number on the board with the + sign and = sign.
I tell Junior that, that is how many worms we already have but the fish is really hungry and wants more. We need to catch a fish to see how many worms he wants.
I attach a number to the back of each fish
then turn them number side down
We "catch" a fish and look to see how many More worms he wants
that number gets added to our math problem and then Junior tells me how many worms the fish wants in all.
We will also do this for subtraction but telling him that his fish are really full and don't want so many worms. We will them subtract the number on the back of the fish we "catch" to see how many total worms the fish wants.

Junior is worn out after some very busy but wonderful days with friends. If he is up to it we will be making our fishing pole to use with our fish games.

Experiencing Life Differently - Camping (Fishing For Words)

Our last posted shared about the fish we have been making so now I will share one of the games we will be playing with our fish.

With Junior it is always a challenge to keep him engaged and focused on what we are doing. He is a smart guy but gets distracted and bored easily. After seeing him use the ipad I now suspect part of that is that his reading level is much higher then we thought. Starting this school year we are adding many new words and blends and are just jumping in and seeing how he does.

He absolutely loves games and competition so making reading a game is the goal. We just finished these fish so haven't tried it out with him but I am fairly certain he will love it.

For our "fishing for words" activity you will need - Fish(see last post for fish ideas), small magnets, some form of fishing pole(we will be using the cardboard roll from wrapping paper, decorating it and adding a string with a magnet at the end, we will share about this in a future post), velcro, pictures or symbols, cards with words(we are using the ipad).

We attached a small magnet to each of Junior's fish(the eye is the magnet), then velcro is attached to the back of each fish.
We had some pre-made plastic symbol cards in the closet which were perfect for this but you could also make your own picture cards. I used a small piece of tape to cover the word on each card.
Attach a small piece of velcro to the back of each picture/symbol card. The pictures will be attached to the back of the fish.
To play the fish will be placed picture side down in the "pond"(a blue piece of poster board, or the floor will work just fine). Using the fishing pole with magnet catch one of the fish and turn it over to see what picture is on the back. Junior will then match the correct word to the picture. He will use his ipad though you could use cards with the words printed on them as well.
If he gets the word correct he gets to keep the fish and if not he has to throw it back. Get 5 right to win(or whatever number you decide on).

I will be sure to come back and add pictures when we try out the game.

Experiencing Life Differently - Camping (Fish, Fish, Fish)

We did our tackle box math project a few days ago and of course if you have a tackle box you have to have some fish to catch.

The past week or so Junior has been making fish during arts and craft time. We use a different method for painting/decorating each fish and it has been lots of fun to come up with new ways to decorate our fish(some of these you have likely seen before). We will be using our fish for math and reading games(which I will share about in our next post).

For fish patterns I just put "fish pattern"or "fish outline" into google search. I found several fish outlines that would work for our projects.

We started with tie dye fish. You will need - A fish outline, coffee filters, tape, spray bottle, markers, paper towels, and scissors.
Place your fish pattern on a water proof surface(we used one of Junior's wedges so it also tilted it so Junior could see it). Put a couple small pieces of tape around the edges to hold it in place.
Cover your fish with coffee filters, I placed a few pieces of tape to hold these in place as well.
Using markers(Junior used dot markers) color on the coffee filters
Then use a spray bottle to spritz your artwork with water
We then used a paper towel to gently dab it to get rid of excess water.
Remove the coffee filters and let it dry
We then cut it out and laminated it
Then it was bubble fish(next time we will be sure to use more then one color)
You will need - dish soap, water, food coloring, a straw, and a fish outline
We mixed a little water and soap together and added a couple drops of food coloring
Junior can't do the blowing part so I blew through the straw to create lots of bubbles
We then laid our fish outline over the top of the bubbles. I would recommend using more then one color. Ours turned out just looking a little green but you can't really see the color that much.
I may try it with paint powder next time instead of food coloring.
Now to Junior's favorite fish. Painting with worms.
You will need - fish outline, paint, rubber worms/grubs.
We dipped the worm in the paint and dragged it across the fish.
Our next fish(sorry I don't have pictures of the step by step) was decorated using tissue paper/crate paper.
You will need crate paper/tissue paper, fish outline, glue, paint brush.
cut or tear the tissue paper into small pieces, paint your fish with glue and then sprinkle on the pieces of paper. All our fish so far(Junior has a few more to make and I will add those here when we do)

Next up fishing for words