Lucy's 2015 Garden

*I thought I had already published this, but it looks like I didn't! Stay tuned for more to come about gardening, science, microscopes, and art! 

Here is tiny baby Lucy showing off the tomatoes in her 2010 garden, the year she was born. 

And here she is starting seeds for her very own 2015 garden!

And here is a handy diagram that was included in our little greenhouse that shows what we planted, so we can remember:

However, in the excitement and confusion of helping Lu dump the seeds in each tiny pod, we got it turned around and misplanted our tomatoes. For a week or two I thought they weren't growing, but then I realized they were all growing, just in the wrong places! Lucy chose to plant Brussels sprouts, because her and I both love them. And also onions, which is what we are working on in this picture:

We were also repotting her tomatoes and Brussels sprouts because they are getting so big! Look how happy she is:

I try to get her hands in the dirt and involved as much as possible, but I can also tell when she just wants to enjoy watching and having her hands left alone.  She doesn't often love having hand-over-hand assistance, and I try to figure out how she can do things without it, but sometimes, it just can't be done.

We have also been keeping a gardening journal, not daily, but when something of note happens, we have been writing it down in a little journal we made. Then we can look back at it next year to remember what we did and what did or didn't work. I just write in simple sentences and then we read it together. She is all about it! 

So in our garden project we are regularly learning about science, nature, and patience. We incorporate literacy, math, and hopefully in the end some cooking. The day after planting the onions, Lu said in her Tobii: "let's go, gardening, homeschool"! In comparison to all of the times I walked into her preschool classroom to find her crying, actual tears, I'll take the happy, relaxed Lucy any day, even if it means that I am responsible for making sure she learns about the world. This is a task I am more than happy to take on. 

P.S. For an fans of the book 'Chrysanthemum" by Kevin Henkes, you might notice on our diagram that we have planted Chrysanthemums and Delphiniums in honor of the book, which has been one of our favorites for a long time! 

Unschooling

I have recently had an epiphany. Without even realizing it, or making a  conscious decision, I have realized that what we do in the way of school is what people call "unschooling". I'm not a huge fan of the term, as to me it sounds like no learning is going to take place. But what it means is that a ton of learning is going to happen, just not in the typical, school-type way. I just re-read the first post I wrote for this blog just titled "Teaching Lu" and in that post I was basically explaining our unschooling ways, without even realizing it. 

What it means is that we will just live life and I will teach Lu all throughout the day in actual, real-life situations. We won't sit down and have school time at 10:00 each day. I won't give her "tests" to see what she learned. The thing is, without her proving it to me, I know a lot of what she has learned already. How do I know? Well, I "presume competence". I know first-hand what she has been exposed to, what we have read about, seen, talked about, and I presume that she has learned it, because I believe in her cognitive abilities to do so. I know without a doubt that she knows all the colors, most of the shapes, some numbers at least to 10, some or most of the alphabet, how to spell and recognize her name, a ton of animals and all kinds of things about them, and many, many other things. I know all of this because we have talked, and read, and played, and done all kinds of things involving all of these topics for years, so why wouldn't she know them? And then in her own time, in her own way, she uses her PODD to say things that express what she knows, without any pressure from me.  

Unschooling allows for people to rest when they need to, to play when they need to, and learn at every opportunity that naturally presents itself. This already works for us because Rett Syndrome really takes a toll on Lucy's body some days. She might have a bad seizure and need to sleep for two hours. She has four feeds a day and she needs to be relatively still during those times so her stomach does not get upset. We have been doing quite a bit of guided reading as per the Four Block literacy model.  Guess where we do it...cuddled up on the couch together. We've been learning a little about money here and there...at the store with Lucy using her own "purse money" to make purchases. She chose and paid for her own new Cabbage Patch the other day.  She's been learning manners, by using them with real people, and she's been learning about germination and seeds by planting some actual seeds, and keeping a log of how they grow. All just real-life things.

I want to interject a short story here that really changed my life. It was basically the catalyst for my decision to not complete my Special Ed degree and change my major to Rehabilitative Sciences:

While doing my block teaching, which is like pre-student teaching, I encountered a middle school boy that had a lot of emotional issues. He was very sweet, and did well in class. One day he came in and it was obvious that his little world was crashing around him. Apparently he was going to fail his grade and not move on to high school. He was a mess.  All I wanted to do was sit and talk this through with him, help him de-escalate, and work though the situation. But...I was the teacher and my job was to continue on with my unit on the Four Square Writing method. I knew full well that that boy didn't give a crap about writing right then, and I understood why. If I remember correctly, a big part of his concern what was going to happen to him at home when his parents found out he might fail. 

I knew that this was only the first time that I was going to be faced with a real-life situation that was a whole lot more important that what I was trying to teach in class, but that I was going to have to put on a back burner and ignore in favor of "teaching". There are students in every school that are hungry, abused, neglected, and lost. Each day they are supposed to go to school and try to sit still and learn, when there might be extreme situations in their lives that should be coming first. I just didn't feel that I was going to be able to worry more about school subjects than helping my students deal with life. Not surprisingly I went on to do counseling and therapy work. 

How I felt about that boy and his impending meltdown is how I feel about Lu. She has so much to contend with by just having Rett Syndrome that I don't feel like it is necessary, or fair to try to squeeze her into some structured educational setting, or even anything very structured here at home. Learning will come as it comes. Chad and I teach her all day, every day, every chance we get. She already knows, I think, most of what other kids her age would know, if not more.  And really, more than any other things in the world, I want Lucy to know without a doubt that she is loved, and valued, and important. There are no text books for her to learn that. 

I realize that this description of school probably sounds even more hippy-dippy than other things I tend to say. I feel certain that the most challenging aspects of this approach will be the task of appeasing others and assuring them that Lucy is learning what she needs to learn, specifically the PA Department of Education, and generally the other people in our lives. I will figure out how to present it to the Dept. Of Ed just like thousands of other "unschoolers" do each year. What I hope to receive from those that love us is the same level of "presumed competence" that I have for Lucy, with faith in me to provide what is best for Lu at all times. She's a smart cookie and my goal is to continue to help her learn about the world around her, while at the same time taking care to be gentle with her emotional and physical well-being first and foremost. 

A Little More Writing

A couple of Sundays ago at breakfast I navigated to the alphabet on Lucy's Tobii so she could do some writing if she wanted to. Here is everything she wrote:

The day before this we had gone to a cheerleading event that my niece, Sierra, organized for her senior project and all proceeds went to Rettsyndrome.org for research. So Lucy saw and talked to Izzy on Saturday and then did her best to spell her name on Sunday! This was the first time I could tell she was trying to spell a specific word all in her own. I also highlighted the words she spelled, whether intentionally or not, as she was exploring the alphabet. She was doing a great job learning to use the "space" button as well. 

I'm not sure why Lu prefers this set up of an alphabet as opposed to them all being on the same page at one time. I made her an alphabet page like that also:

I modified this one from a a keyboard that was already available on Lu's Tobii, but she seldom stays in it long before going back to her home page, but she stays in the alphabet that is in her PODD in the Grid2 for quite some time. She is never stuck in either and knows how to stop writing if she wants to, so it seems like she enjoys it! Through her own exploration and some guidance and help from me, as well as literacy education of course, I think Lu will be writing plenty of words someday! 

Dining out

One of our favorite things to do as a family is to go out to eat. We have specific places that we stop at on our various doctors appointments as well. For example, when we go to New York to see Dr. Sasha, we always stop at Chili's on the way home. And when we go to Williamsport to get new AFOs from Bernie we always eat lunch at Ruby Tuesday. So a few months ago I started thinking about how Lu could more efficiently and independently choose what she wanted when we are out to eat, and even maybe order her meal on her own.  After all, if Lucy was a child who could verbally speak, I would be encouraging her to do the same thing.

On "Lucy's Homepage" on her Tobii I have a page she can go to called Activities where she can play some games, play the piano or drums, write with an alternative pencil, and then I added just a link to restaurant menus:

Then she can open the menus I have created for her so far:

I have used either actual menus from the restaurants or just found images on Google of the entire menu, to put them onto Lu's Tobii and then I decided how she could best make her choices. Here is a more exciting kids menu for an example:

 This is from Chili's. 

And this one was much less interesting for children, but I just added pictures so she knew what she was choosing. This is from a local restaurant called Olde New York:

Here is how the progression of Lu's choosing and ordering success has gone:

In preparation of going out to eat, I show Lu the menu several times in the days beforehand, so she gets an idea of what she will be able to choose from. I even pretend to be the waitress and use a pen and paper and ask her what she would like to eat and then when she makes a choice I write it down and show her. So, we do this however many times it gets done, just casually, for a few days before the big day. 

The first time Lu had her own menu in a restaurant was at Ruby Tuesday. She had pretty consistently chosen grilled cheese and a cupcake at home, but not surprisingly, when the time came that the waitress was there asking her what she wanted, she kind of froze up. In the end, I asked her if she wanted a grilled cheese and she nodded yes. Leading up to her first try of ordering out (and each time after) I assure her that she can choose to order for herself or not, no pressure. 

The second attempt was at Chili's. This time she chose a chicken sandwich when the waiter was not around, so we ordered that for her. She was very pleased with herself for making her own choice known.

The third time was just a few weeks ago. We took my parents out to eat, as a Christmas gift, at Olde New York, a local restaurant with German-type foods. As the waitress waited for Lu to say what she wanted, Lucy chose chicken tenders! It was awesome! So that's what she had, chicken tenders, because that was what she chose! 

Is this "school"? I say hell yes. Is this teaching? Ummm, undeniably yes. I feel like one of the most important things she is learning in these "lessons" is not just how to order her meal at a restaurant, which is something we all need to learn, but she is also learning that she matters. She is continuing to learn that she is capable of participating in all aspects of life, and not just that she is capable, but that we expect it of her. There is some literacy involved, and she is continuing to improve her abilities and proficiency in using her Tobii, but sometimes I think the lessons that are even more important for Lu (and all children) to learn involve not academics, but lessons that help to teach them about how valuable they are as humans, and how to interact with the world around them. 

I don't know if this desire is so strong in me due to the fact that people with disabilities can often be seen as "less than" in society. Less capable, less valuable, less likely to contribute as people who do not have disabilities. That is why I will often pour all of my energy into activites and projects that will continue to help Lu know we value her, and instill in her a sense of validity as a human. I always want her to know that things are possible for her, and one way or another, she will contribute and live a full life.  And I think, just learning that she CAN choose and order her own meal is a small step toward a big future. 

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.