Super Hero Memory

We have been playing a memory game for over a year now with super heroes as the cards. I got it for a few bucks at Kid to Kid and then I created a set up that enables Lu to easily choose which cards she wants turned over. After all of this time, she finally got her very first match, all by herself! Here is how we do it: 

I made this page on her Tobii:

And then I made this simple game board to correspond with the Tobii page:

And in the picture above you can see that Spider-Man was her first match! Lu and her Daddy were playing one Sunday morning while they waited for me to make breakfast. It was very exciting! As you can see from the pictures, I put tiny pieces of Velcro on the cards and each square so they can stay put a little better, as Lucy's hands are so out of her control. And the process is simple: Lucy chooses with her Tobii which cards she wants turned over and then we turn over the physical cards for her. And when it is her opponent's turn, we play in the same way so we can model for her how she will take her turn. We have a couple of other memory games and I just picked up a sweet Scooby Doo version at Goodwill for 50 cents the other day, so there is lots of room to grow with this. And as she gets better at making matches and engaging in the game, we can add more cards to make it more challenging. 

So, I just wanted to share this simple yet fun way to practice matching, turn taking, and using the Tobii to play a game. 

Without a pencil

In the spring, a sweet lady named Courtney befriended me after seeing a picture of Lucy on the Great Bike Giveaway page. Courtney jokingly says she "stalked" me after falling in love with Lucy's picture. It turns out she also has a daughter named Lucy, but her Lucy has Angelman's Syndrome. Courtney found me via my blog and we became Facebook friends. She then invited me to join a group on FB that is centered around teaching literacy to children with Angelman's. Angelman's and Rett have many similarities, and so the group has been extremely beneficial to me. What is especially fantastic about this group of people is their optimism and their belief in their children, and their belief in all children with disabilities, to learn!

So, one concept I had never heard of before is something called an "alternative pencil". This is any method of writing that doesn't necessarily use an actual pencil. People use paper flip charts, eye gaze boards, keyboards, alphabet charts on their communication devices...you get the idea. I guess I hadn't thought yet about how Lucy was going to learn to write, but I often think of when the day will come that she can just type out what she wants to say and will not need to use pictures to communicate. 

Within Lucy's paper PODD book she has alphabet pages she can use.

In her PODD that uses the Grid2 software on her Tobii, she also has an alphabet section where she can practice using letters and forming words.

And this is what each section looks like when it is opened:

Here is a picture of what Lucy wrote the first time she gave it a try, and then she illustrated it by choosing items to make a 3D collage:

This is her writing from another time:

And a few weeks ago we used her alphabet to make a birthday card for her sweet friend, Mason. 

This time I asked Lu to help me spell Happy Birthday. In the word happy she correctly found the H and the P! And in birthday she found the B and I believe the R, but I can't find the paper where I originally was dictating her letters. 

So, obviously Lu isn't "writing" "words" at this point, but what she is doing is exploring, experimenting, and learning. Children that can pick up a writing implement and grab a piece of paper will spend hours and hours of their life learning about letters. This is how Lu can do the same thing, just, as always, in a slightly different way. She won't adorably make backwards letters, or write her name gigantically across a page, but she will write her name. She will use letters. And what she will do someday is simply type out what she wants to say, and she will truly be an independent communicator.  When we are messing around with the alphabet, each time I remind her of how she will be able to do that someday and she will truly, truly be able to say absolutely anything she wants! 

Here are a few great links to learn more about alternative pencils, as I am just learning myself!

http://www.med.unc.edu/ahs/clds/products/available-for-purchase

http://fourblock.wikispaces.com/file/view/Alternate+Pencil+CD+-+Order+Form.pdf

Both of those links have products that can be purchased if someone chose to do so. I myself, if we didn't already have great alphabet tools, would just make my own. It's not rocket science, but not everyone's first thought is to just make their own of whatever is being discussed, but mine is. I just wanted to share the links for info, inspiration, and guidance.

So, let's get EVERYONE writing! 

A Golden Day

Monday was golden. Lu and I slept in together until 7:30. That made her first feed late, which is no big deal, but we decided not to go swimming at the Y like we usually do on Mondays since we were running late. Lu didn't have any therapy appointments scheduled, and she didn't have any giant shaking episodes. So, like Pony Boy, the day was just GOLDEN. She was awake, alert, and happy. We had no schedule to follow but our own, the sun was shining and it was 60 degrees out!  

At breakfast I read a letter to Lu that came in the mail, the real mail, from her friend Maddie. Maddie asked what she did on Saturday. I helped Lu get started on her Tobii to write a response to Maddie. We went to special events in her PODD. Lucy chose to say "present, new" which surprised me because we also went out to dinner and did some visiting, but she did get a present on Saturday also. I asked her if she could tell Maddie what kind of a present she got. It took her a few minutes, but she eventually said, "Halloween", which was correct. I then went to people for her and asked if she wanted to tell Maddie who the present was from.  On the third try she chose Grandma Brenda, which is who the gift was from! It was great, and totally what she wanted to say, not what I thought she was going to say.

After breakfast we did some walking and standing and then kept her braces on so she could get even more exercise throughout the day. We had lunch, and then went out to the back porch to do some "gardening". Lu asks to garden all the time, so we do a lot of container gardening. Yesterday we were repotting a "Lucky" clover plant that we started from seed, and a spaghetti squash plant. I saved some seeds from a spaghetti squash a local farmer friend gave us, and just to see if they were hybrids or not, I planted a few to see if we could use them next spring. It not only grew, but is doing amazingly, so Lu and I are going to see if we can grow a squash in the house. 

If you scroll to the top of the blog you will see a picture from late in the summer where Lu and I were planting peas. Here is what we observed yesterday:

If you look closely, you can even see a little pea pod. Lu and I actually counted four pea pods total, and we talked about how we will pick them eventually and cook them for supper some night. So, then at supper that night, Chad used Lucy's PODD book to ask her how many peas we have.  I told her I would help her answer and I modeled how we could say, "We, have" and then I let it up to her to tell her Dad how many pods there were and here is what she said:

I struggle with the fact that so many doctors, families, school teams, etc. around the world still don't believe that trapped inside of these amazing girls are people who think and learn, and are smart, and have things to say.  I reminded Lu in a whisper that we had seen four, so just by hearing the word, she was able to locate the correct number on her screen and add it to our sentence. She completely understood what I was asking her. We work very, very hard every day to help Lucy learn how to communicate and I just believe so, so strongly that a large part of her success comes from not going to school. 

Days this golden can sometimes be few and far between, especially lately with the shaking episodes followed by lethargy.  But even on the less-than-golden days, we still snatch any opportunity we can to learn. The beauty of being educated by me at home is that we can do whatever we want, and most importantly, whatever we NEED.  Sometimes Lu just needs to cuddle, and rest, and she always tells me so. The busy classroom is not conducive to just stopping to rest and cuddle when necessary. And, she needs to cuddle me, not some stranger. 

So, on this golden day, we gardened. We learned how our pea seeds are becoming pea pods. We counted them, we did pt, OT, and speech all be ourselves. Lucy told her Daddy about her day, and began writing her first letter to a friend. And we even had time to walk with Finn up to Grammy and Pappy's to get some candy Grammy made. It was just a great day, and a great example of how being homeschooled is what is best for Lucy. 

Something tells me it's all happening at the zoo...

Chad took the day before the strollathon off last month and we took Lu to the zoo for the first time. It was fun, in spite of the temperature being over 90 degrees! While we were eating lunch, about halfway through the zoo, we asked Lu what had been her favorite animal so far and she said, "gorilla" with her Tobii.  I don't remember for sure, but I probably ordered a zillion gorilla books on the public library site that very night in our hotel room to be delivered to our library to encourage her interest. She also left the zoo with an adorable stuffed gorilla that she chose in the gift shop. (Together we named him Kerchek from Tarzan, I made suggestions and she liked Kercheck.)

So, we saved some little things from our zoo trip like the map and the wooden tag from Kercheck, and the following week we talked about what we remembered from the zoo. I went to her animal pages and asked her if she could tell me some animals that she remembered seeing. Of course she said gorilla, then she also said lion, tiger, kangaroo, and seahorse, which we did see all of those! But she also said lobster and one other one that I can't remember, but we didn't see either of those I reminded her. I told her I'd check with her Daddy to make sure they didn't see a lobster while I was in the restroom (they didn't). So, we used the map to cut out pictures of the animals we had seen, and added a few that Lu hadn't mentioned, but she chose to include because we did see them, and then we gathered up some extra collage making supplies. 

Lucy has special adapted scissors that we are borrowing from the intermediate unit:

So she is able to use these for working all kinds of projects, including collages. It is hard for her, but good practice for trying to be in control of her own body.  We use a soft arm brace on the arm not using the scissors to help improve her control. We have done collages in the past where Lu has done all of the cutting, but this time, I wanted her to be more in charge of placement of the pictures and embellishments. So, I went to her PODD on her Tobii and we found the position words and Lu was able to choose where on the paper she wanted to put everything.  Below is a picture of the finished collage. Afterward I added all of the words she had chosen to use during the activity so she could see them and remember what they looked like and where they were.

So, while we created this collage, it was not a quiz. I did not point to the top and ask her what part of the picture this was. I just waited until she chose a position word and then we talked about where to place it in that area and reiterated that it wa the top, bottom, middle, etc. At one point, we were trying to decide where to put the red panda and Lu wasn't choosing any position words, so I was just asking her yes and no for where there were spaces opened. She chose yes for where the panda is placed above and as I was helping her paste it on, she then said, "bottom" with her Tobii. So, I didn't even have to "quiz" her to know what she was learning, without any pressure, and just teaching instead, Lu willingly shared with me what she knows. 

We did this project over two days. We took our time, and made it enjoyable, and she liked it. I used other opportunities just in our daily routine to review the different position words also. For example, after her shower each night I use the boogie sucker on her nose (top), wipe dry her feeding tube and put a pad around it (middle), and get her diaper on (bottom). When she is practicing walking, we always refer to her feet as "lefty" and "righty" as we encourage them to take their turns at stepping.  

Since apraxia makes every single body movement difficult for Lu, giving her time, minimal pressure, and lots of natural and relaxed learning opportunities seems to lead us to successful lessons. I feel pretty confident, most of the time, that I am doing an okay job at educating her. I just always try to remind myself, "she is only four, don't rush, don't panic, take your time." 

Teaching Lu

I have decided to start this other blog, in addition to Understanding Lu, to focus on Lucy's education, and how we go about teaching her, while working through her complex communication needs, her medical issues, and just Rett Syndrome in general. Below are two fairly recent blog posts I wrote that talk about my past experiences with teaching (15 Years Later), and also my feelings on how I will help Lucy develop social skills without public school.
"What About Socialization?"
15 Years Later

In the post "15 Years Later" I talk about the lack of pressure other countries, specifically Finland, puts on it's children to start formally learning from an early age. I believe in that concept whole-heartedly. Lucy is only four.  We don't have designated "school time" each day, at this point. We cuddle when she needs to. She rests when she needs to. We go outside to play when we can. But, at the same time, she is still always learning. I never stop talking to her, and explaining things to her, and introducing her to the world around her. I am constantly on the look out for great experiences for Lu, no matter how small. And then, when it falls into place, we might get a kind of structured lesson/activity accomplished. We like to display those types of things on her school bulletin board that is in the kitchen, so she can see it and remember what she learned.  So, I have a kind of relaxed philosophy about how quickly Lu needs to be learning things. I feel like she will learn in natural, life situations as time goes on and that we will increase our "school time" as she ages and grows, and there will be a flow to it, that won't be forced. I hope that's how it goes anyway!

However, I do have one specific goal. Not one that has real, measurable outcomes, or a timeframe or anything structured, but I want to help Lu learn to read on her own as soon as possible. My rationale and motivation for this is because it is one thing she will be able to do and enjoy independently. There are special programs that provide ebooks for free to people who cannot physically hold a book on their own.  She already reads books on her own on her Tobii. Most of them I have made for her, some are ones that others have made, but they also have voice output so she can see the words, and hear the stories. Someday she will just be able to sit and read on her Tobii, and I want that so much for her. 

I have literally been reading to Lucy since the week we came home from the hospital. It is probably one of our favorite things to do together, and we do it A LOT.  We read a lot of nonfiction, but we also always have storybooks to read. Lu likes poems and cookbooks too. And we have been reading chapter books together for maybe almost a year now. We read the ones that aren't too long, and still have pictures to look at here and there, but she has some favorites and favorite series that we have come across. Her and her Daddy are loving The Magic Treehouse books right now. For a few years now, we are always having a little unit going just based on an interest Lucy has expressed, or something we have wondered about, or just whatever might be going on around us. So, I have read that the single-most important activity to helping children become readers is to read to them, and I feel confident that we have that thoroughly covered. I will admit that I am a bit of a compulsive [used] book buyer. I get a ton of Lu's books at Goodwill, or Kid to Kid. And at the end of spring last year I discovered that the public library has a monthly book sale and kid's books are a quarter! It is amazing! And of course we save hundreds of dollars by using the library all the time. We always have between 20 and 30 books checked out. And, just as a side note, because the library is a quiet, calm and welcoming place, Lucy always has the chance to practice her "socialization skills". Granted, it is mostly with the librarians, but it is still good for her. We have known the library ladies for three and a half years now so she is comfortable with them. She has initiated interactions with her Tobii, and when we come in the door it's kind of like a big welcoming committee for Lu, because they love to see her. 

In addition to all of the reading we always do, Lu was first exposed to the PODD book when she was two and a half years old. In addition to the symbols she uses, the word is always right below the symbol, so she has to have been learning a ton of words all of this time. And, in the past few months, Lucy has been starting to be able answer questions more purposefully and kind of starting to be able (or willing, but I believe it's more about able) to show us what she knows and understands. My belief is that she knows a lot of words, and probably already reads some, but I don't want to pressure her or be crazy about her reading, so we are just taking our time and starting to work on some comprehension and literacy activities here and there to see where she is. 

I have been using a mixture of making up pagesets to talk about a specific book, and also using her PODD to talk about them as well. We have been working on looking at a cover to guess what we think the book might be about, as well as some other prediction-type questions, and then also talking about characters, and reviewing what has happened in a story.  She doesn't seem to mind it, and especially likes the guessing questions. 

Here is a pageset I made where we were guessing what a book called "The Day the Gorilla Came to School" might be about. I didn't tell her the title, we just looked at the cover which had a gorilla on it. Lu insisted it was going to be about race cars! I told her my guess was it was going to be about a gorilla. We did this same activity with a book called "Lucille" which is about a horse named Lucille who is on the cover and Lu guessed correctly that time that the story was going to be about a horse.

On the title page of the book there was a picture of a lady carrying a big bag that had a gorilla arm hanging out of it. I asked Lu what she thought was in the bag, a real gorilla or a gorilla costume, and she guessed a costume, and was correct! 

We have so much to do, and so much to explore, and a nice amount of time to do it because Lu doesn't go to school. She has five therapy sessions a week, plus we have been going to the YMCA to swim once a week, so our schedules are still a little packed, but we love being able to be home together and control our own days. 

And in case anyone doubts that Lu prefers to be home with me doing school, here is just one of her many comments she has made about doing school with me.